Support Groups H, I, J, K

How to Use -- Contents

Slightly Creaky does research to find the links you would most likely need and provides them for you in an easy-to-find format. You can access the various categories from any of our pages using the top or side menus. Each category has generalized headings, followed by more specific ones.

Many support groups are named for people, are generalized and provide assistance for several related conditions, or are otherwise difficult to interpret. This page provides links alphabetically based upon specific ailments. Please scroll down, use the index link, or use your browser's "find" or "search" feature to get the the area you are seeking.

In addition to support groups, we include links to informational sites on these conditions.


Updated January 1, 2012

        Please Contact us if you find a broken or bad link.

Links to Support Group pages:

Alphabetical
List:

Quick Links to selected categories:
Support Group Home Page
Includes directions, hints for use, etc.
See the "Medical Information" page for Medical Definitions, Pharmaceuticals and Home Remedies, Advocacy Groups, Medical Articles

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Support Groups "H"


"H"


Haemochromatosis Heamchromatosis Society   (UK)     Haemochromatosis is a genetic disorder causing the body to absorb an excessive amount of iron from the diet: the iron is then deposited in various organs, mainly the liver, but also the pancreas, heart, endocrine glands, and joints.
New Zealand Haemochromatosis Support & Awareness Group   The purpose of this website is to inform people of our organisation and its aims, enable people to contact the support and awareness group, advertise our regular meetings, publish the faqs and provide links to other sites
Hemochromatosis Support Group    A community of patients, family members and friends dedicated to dealing with Hemochromatosis, together.
The Haemochromatosis Support Group    We offer information, support and friendship. If you , a family member, or a friend have haemochromatosis , this is the group for you.
Hallerman-Streiff Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Hallerman Streiff Syndrome Support on Facebook.    A group for people with Hallerman Streiff Syndrome and friends and families to come together.
Hallermann Streiff Syndrome (From WebMD) Information wWith support group links.
Hantavirus


Information Link
Hantavirus Pulmonary Syndrome       Informastion and links.
Hantavirus Infection is a deadly viral disease contracted from rodents. Learn more about all conditions, including Hantavirus Infection. Research the condition by topics such as causes, symptoms, diagnosis, complications, and more. Learn how to take action with information on Hantavirus Infection treatment options, prevention methods, support groups, and more.
I Have Hantavirus Pulmonary Syndrome       Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hartnup Disease Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Hartnup Disease Support Group    A community of patients, family members and friends dedicated to dealing with Hartnup Disease, together.
Hartnup Disease or disorder is an autosomal recessive metabolic disorder effecting the transport of neutral amino-acids in the kidney and gut. It was first described in London in 1956,1 afflicting 4 of 8 Hartnup family members.
Head Lice





Information Link
Head Lice.org    The National Pediculosis Association answers your most common questions.
I Hate Head Lice    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Head Lice Blog    Lice, head, Nits, Pediculosis capitis, head lice
Headache




Also see Migraine




Information Links:

Cluster Headaches

Headache

Migraine Headache

Sinus Headache

Tension Headache

Headaches in Children


Headache Central    This site has been sponsored by the Michigan Headache Clinic since 1996 as a public service to the millions of headache sufferers. The purpose of this site is to educate you about the illness and how to get help. Many people are not aware that headache problems can be solved.
I Hate Headaches   Although there are millions of Americans who suffer from debilitating episodic or chronic headaches, many people feel they are alone in the suffering. There are hundreds of headache support groups in large cities or online where you can go to find out how other people with the same types of headaches as you are able to manage their day to day lives.
Headache Support Group    Join the 'Headache' group to help and get support from people like you.
Daily Persistent Headache Support Group A community of patients and friends dedicated to dealing with NDPH and other chronic headache conditions together.
Cluster Headaches    This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!
Daily Strength - Migraine Headaches Support Group    Discussion boards.
Migraine Headaches Support Group    A community of patients, family members and friends dedicated to dealing with Migraine Headaches, together.
Headaches Simplified    Our Support Group Database provides an extensive list of public and private headache-related education centers, government organizations, and local area community support and counseling groups that are ready to assist you in your specific headache-related condition.
Hearing      see Deaf & Hearing Loss
Heart Failure


Also see CHF

Information Links
(More below in the Heart Disease section)

Heart Failure
Heart Failure Online   Heart failure may result from one or the sum of many causes. It is a progressive disorder that must be managed in regard to not only the state of the heart, but the condition of the circulation, lungs, neuroendocrine system and other organs as well. When other conditions are present (e.g. kidney impairment, hypertension, vascular disease, or diabetes) it can be more of a problem. Finally, the impact it can have on a patient psychologically and socially are important as well.       
Heart Failure Society of America    Heart failure is a condition that affects nearly five million Americans of all ages and is responsible for more hospitalizations than all forms of cancer combined. Over 400,000 new cases of heart failure will be diagnosed in the next year. Yet many people with heart failure are not aware they have it, because some of the most common symptoms of heart failure, such as feeling tired and short of breath, are often mistaken for normal signs of getting older.
Hershey Hearts   We are committed to supporting, helping, and educating families with children with congenital heart disease. This is achieved through meetings, newsletters, and a visitation program. Our aim is to strengthen families during their long journey from despair to hope.
Heart Disease
and related illnesses         





Information Links


Heart Disease

Heart Attack

Heart Attack Prevention

Heart Attack Treatment

Heart Rhythm Disorders

Heart Bypass

Heart Murmur
American Heart Association      Our mission is to reduce disability and death from cardiovascular diseases and stroke.     
Heartbeat International With each new year, comes new challenges. Are you up for the fight? We are! Join our crusade in the ongoing fight against treatable heart disease and Jumpstart-a-Heart today! Everyday around the globe millions of people are dying needlessly from treatable heart diseases because they are too poor to afford a pacemaker and implant surgery. Learn how our life-saving pacemaker program is making a difference around the world and how you can help.
Kids With Heart    Our organization was formed in 1985 with the main mission of providing support, information, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis. 
Mended Hearts    Mended Hearts has been offering the gift of hope to heart disease patients, their families and caregivers for more than 50 years. Recognized for its role in facilitating a positive patient-care experience, Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums. Our mission is to "inspire hope in heart disease patients and their families."
National Heart Forum, The  (UK) The National Heart Forum (NHF) is a leading alliance of over 50 national organizations working to reduce the risk of coronary heart disease and related conditions such as stroke, diabetes and cancer. Our diverse alliance comprises charities, non-governmental and medical professional organizations.
World Heart Federation    World Heart Federation helps people achieve a longer and better life through prevention and control of heart disease and stroke, with a focus on low and middle income countries.                             
American Health Assistance Foundation  AHAF is one of America's leading supporters of scientific and medical investigations into Alzheimer's Disease, Glaucoma, Macular Degeneration, Heart Disease, and Stroke.
Larry King Cardiac Foundation      The mission of the Larry King Cardiac Foundation is to provide funding for life saving cardiac procedures for individuals who, due to limited means and no insurance, would be otherwise unable to receive life saving treatment.         
Heart Disease at the Deborah Heart & Lung Center. Information about a variety of heart conditions.
WomenHeart Our mission is to improve the quality of life and healthcare for women living with heart disease, and to advocate for their benefit.  
Heartburn - see Gastroesophageal Reflux Disease
Helicobacter Pylori


Information Link


see Ulcer
Helicobacter Foundation  (Australia)      Helicobacter pylori is a spiral shaped bacterium that lives in the stomach and duodenum. It has a unique way of adapting in the harsh environment of the stomach. The inside of the stomach is bathed in about half a gallon of gastric juice every day. It used to be thought that the stomach contained no bacteria and was actually sterile, but Helicobacter pylori changed that.
Hemochromatosis




Information Link:

Hemochromatosis
American Hemochromatosis Society   Hemochromatosis, also known as iron overload disease or "genetic iron poisoning", is the most common genetic disease in the U.S.A.. One in 8 are "silent carriers" of the gene mutation and 1 in 100-200 have the double mutation putting them at high risk for developing full blown HH. HH can affect men, women and children at any age. Most of the 33 million Americans who have the HH gene mutation don’t know it but it can be diagnosed easily and quickly.            
Iron Overload Diseases Association, Inc. Undetected or untreated excess iron kills after inflicting injury to a variety of body organs.
Iron Disorders Institute   An iron disorder occurs when iron is out of balance in the human body.
Canadian Hemochromatosis Society   Established to create awareness about this little-known, but common disorder so that early diagnosis would become the rule rather than the exception and needless suffering and premature death from undiagnosed hemochromatosis would become a thing of the past.
Daily Strength - Hemochromatosis Support Group     Discussion boards
Hemochromatosis Support Group   A community of patients, family members and friends dedicated to dealing with Hemochromatosis, together.
Hemolytic Uremic Syndrome



Information Link:

Hemolytic Uremic Syndrome
Foundation for Children with Atypical HUS  Hemolytic Uremic Syndrome is a rare but important cause of severe kidney failure in children. 2-4 new cases per 100,000 are reported-Possibly 7,500 children have HUS. Patients may require dialysis. While permanent kidney failure is rare, HUS is one of the leading causes of kidney failure.
Also visit their Atypical HUS information site.
Hemolytic Uremic Syndrome support group in FaceBook. I hope this group can support people with this syndrome as well as other Kidney diseases, young and old alike.
Daily Strength - Hemolytic-uremic syndrome (HUS) Support Group    Discussion boards
Hemolytic-uremic Syndrome Support Group    A community of patients, family members and friends dedicated to dealing with Hemolytic-uremic syndrome, together.
Hemophilia



Information Link:

Hemophilia
Hemophilia Galaxy    Hemophilia is a rare genetic blood clotting disorder that primarily affects males. People living with hemophilia do not have enough of, or are missing, one of the blood clotting proteins naturally found in blood. In persons with hemophilia A, clotting Factor VIII is not present in sufficient amounts or is absent. In persons with hemophilia B, clotting Factor IX is not present in sufficient amounts or is absent. People with hemophilia do not bleed more profusely or bleed faster than normal; they bleed for a longer period of time.
National Hemophilia Foundation    The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. 
World Federation of Hemophilia    (Canada)   The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
Hemophilia Federation of America The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.
Daily Strength - Hemophilia Support Group    Discussion boards
Hemophilia Support Group    A community of patients, family members and friends dedicated to dealing with Hemophilia, together.
International Henophilia Support Groups    Lists and links
Hemophilia Support Group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hemophilia
Hemorrhoids



Information Link:

Hemorrhoids


Hemorrhoids Support Group    A community of patients, family members and friends dedicated to dealing with Hemorrhoids, together.
Hemorrhoids Support Group   Get advice and support from thousands of patients like you
Hemorrhoids Forum   A health community featuring member and doctor discussions ranging from a specific symptom to related conditions, treatment options, medication, side effects, diet, and emotional issues surrounding medical conditions
I Have Hemorrhoids     Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hepatitis




Information Links:

Hepatic Hemangioma

Viral Hepatitis

Hepatitis A

Hepatitis B

Hepatitis C  

Hepatitis Immunizations
Hepatitis B Foundation        We are dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Our commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.          
Hepatitis Foundation International  The National Nurses Advisory Council for Liver Wellness & Viral Hepatitis was created to improve hepatitis related health outcomes by initiating collaborative programs: To promote education and prevention; To improve the quality of care given to patients; To serve as advocates for patients, researchers, and medical professionals
Children’s Liver Disease Foundation Our vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.
Hepatitis Support Groups     Worldwide
Hepatitis C Support Groups   Click on a state foir information
Daily Strength - Hepatitis C Support Group    Discussion groups
Hepatitis C Support Group    A community of patients, family members and friends dedicated to dealing with Hepatitis C, together.
Hepatitis C Support Boards    his information and interaction provided on this site is solely for informational and educational purposes and does not constitute the practice of medicine.
Daily Strength - Hepatitis B Support Group    Discussion boards
Hepatitis B Support Group    A community of patients, family members and friends dedicated to dealing with Hepatitis B, together.
Hermansky-Pudlak Syndrome Hermansky-Pudlak Syndrome Network, Inc.   Hermansky-Pudlak Syndrome is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding.
Hernia




Information Link
Hernia Online Health Community and Support Group     Through this Hernia support group, you can get Hernia information, share experiences about Hernia, connect with peers, and get answers to your Hernia questions from health professionals.
The Hernia Forum     A health community featuring member and doctor discussions ranging from a specific symptom to related conditions, treatment options, medication, side effects, diet, and emotional issues surrounding medical conditions.
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support    We are truly a grassroots organization - CDH families creating something out of nothing when there was no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.
Inguinal Hernia and Hypospadias Support Group     Hypospadias is a common birth defect. It is a condition in which the urethral opening does not form completely to the tip of the penis. Instead, the opening may be located anywhere along the underside of the penis.
Inguinal Hernia Support Group   A community of patients, family members and friends dedicated to dealing with Inguinal Hernia, together.
Daily Strength - Inguinal Hernia Support Group     Discussion boards
Congenital Diaphragmatic Hernia Support and Awareness      Message boards
Hiatus Hernia    Learn more about hiatus hernia by joining our online group and asking your questions to the experts.
Hiccups




Information link
Awkward Hiccup Support Group on Facebook   For those with sporadic, uncontrollable hiccups and who are faced daily with judgmental stares from surrounding onlookers.
Chronic Hiccups Support Group on FaceBook     A group for everyone who shares the irritating ailment of intractable/chronic hiccups. Maybe we can find a cure or something.
I Hate Getting Hiccups    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hiccups and Carrots Support Group     Blog. I’d bring you together because clearly you need each other. We must all have support, even if it’s for something as odd as carrots and hiccups. So, here you are, an entry dedicated solely to people with your affliction.
The 'Hiccups' Group     To help and get support from people like you.
I Get Hiccups Everyday     Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hiccups     Message board
Hidradenitis Suppurativa Hidradenitis Suppurativa Foundation  An inflammatory skin disease that affects an estimated 1% of the population. Also called Acne Inversa, the main features of HS include painful nodular and boil-like lesions, scarring, sinus tracts and recurrent discharge, which have a significant impact on a patient's quality of life.       
HS USA   We are dedicated to bringing about greater awareness and understanding of Hidradenitis Suppurativa, a disease widely spread but largely unknown, within the medical profession and in the public at large; to encourage teaching in the schools; to train health practitioners to help identify, diagnose, and treat HS; and to foster scientific research.
Hidradenitis Suppurativa Support Group    A community of patients, family members and friends dedicated to dealing with Hidradenitis Suppurativa, together.
Daily Strength - Hidradenitis Suppurativa Support Group    Discussion boards.
Hidradenitis Suppurativa Support on FaceBook     Support group for sufferers of Hidradenitis Suppurativa. We hope to raise awareness for this skin disease that has no cure.
I Have Hidradenitis Suppurativa    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hirschsprung Disease



Information Link
Hirschsprung's & Motility Disorders Support Network    An organization that makes it possible for of ordinary people and families, who's children suffer from Hirschsprung's Disease and other Gastrointestinal motility disorders to support each other.
Family Village   Welcome to the International Rare Disease Support Network's (www.raredisorders.com) support group for people affected by 'Hirschsprung's Disease.' This support group is open to anyone interested in making friends, sharing information and support for people affected by this rare 'orphan' disorder.
Hirschsprung Disease Support Group   A community of patients, family members and friends dedicated to dealing with Hirschsprung Disease, together.
Hirschsprung's Disease Family Support Group (Facebook)
Pull-thru Network     The Pull-thru Network is a volunteer-based organization dedicated to providing education, information, support and advocacy for those individuals, and the families of those individuals, who are affected by any congenital anorectal, colorectal or urogenital disorder and any of the variety of related diagnoses.  
Histiocytosia Histiocytosis Association of America  Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.
Langerhans' Cell Histiocytosis Support Group   This is such a rare disease, and when your child is diagnosed, you want support. Were here to give that to each other! Histiocytosis Support Group    A community of patients, family members and friends dedicated to dealing with Histiocytosis, together. Histiocytoma, Malignat Fibrous Histiocytosis Support Group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Histiocytoma, Malignat Fibrous Histiocytosis.
I Have Histiocytosis X      Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hives - See AngioEdema
Hodgkin's Lymphoma and Disease




Also see Blood Cancers




Information Link:

Hodgkins Disease
Cure Hodgkins.com  CureHodgkins.com is an on online magazine that connects Hodgkin's Disease patients and their families with the most up to date and relevant information on the Internete. CureHodgkins.com is packed with resources and information, as well as stories of hope and survival. New to CureHodgkins.com are articles that highlight recent news about Hodgkin's survivors as well as others around the globe working to find the cure. 
Hodgkins Lymphoma Support Group    Message Board and discussion group.
Lymphoma Support Programs    Links
Daily Strength - Hodgkin's Lymphoma Support Group-  Message Board and discussion group.

Hot Flashes




Information Link:

Hot Flashes
Hot Flashes, or hot flushes, are a feeling of internal heat accompanied by sweating and a racing heartbeat. Women going through menopause often experience hot flashes. It’s caused by changing hormone levels, and while there is no cure for hot flashes, they can be managed with diet and lifestyle changes. Join our online group on hot flashes to talk with others who have gone through the same problem and learn how they cope with it.
I Have Hot Flashes    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Speaking About Hot Flashes     What are you doing about yours?
What do you do about the emotional ups and downs?
Hughes Syndrome


also called
Antiphospholipid Syndrome


Information Link
Hughes Syndrome Foundation  (UK) Antiphospholipid Syndrome was first described as a complication of the disease ‘lupus,’ but it is not. Hughes Syndrome is an autoimmune disorder which can present many clinical features, some of which can be life threatening, including strokes and thrombosis, and it can also be the cause of recurrent miscarriage. The good news is that, once diagnosed, Hughes Syndrome is potentially treatable; the bad news is that, as the condition is relatively new, it often goes undetected or misdiagnosed.
APS Foundation of America    Antiphospholipid antibody syndrome (APS) causes blood clots in the veins or arteries, miscarriages and other problems. The condition can affect any organ, including the lungs, brain, liver, kidneys, eyes, heart and skin. Women with the syndrome can have repeated miscarriages or late-term death of the fetus
Antiphospholipid Syndrome Support Group   A community of patients, family members and friends dedicated to dealing with Antiphospholipid Syndrome, together.
Daily Strength: Antiphospholipid Syndrome Support Group
Huntington's Disease



Information Link:

Huntington Disease
Huntington's Disease Society of America Huntington's Disease is a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.      
Hereditary Disease Foundation     The Hereditary Disease Foundation focuses on Huntington's disease, a fatal, autosomal-dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline.
Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.   
Huntington Chorea Support Group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Huntington Chorea. You're not alone.
Huntington Disease Advocacy Center    This message board is a way for you to build an extended support network of others who have personal experience facing HD issues.
Huntington's Disease Support Group    A community of patients, family members and friends dedicated to dealing with Huntington's Disease, together.
Daily Strength - Huntington's Disease Support Group     Discussion boards

Hydrocephalus



Information Link:
Hydrocephalus

 

 

 

 

Hydrocephalus Association    An abnormal accumulation of cerebrospinal fluid within cavities inside the brain. CSF contains nutrients and proteins necessary for the nourishment and normal function of the brain. It also carries waste products away from surrounding tissues. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed.
Hydrocephalus Family Support Group      Our purpose is to nurture understanding, and awareness of Hydrocephalus in our community. We offer hope and encouragement by providing a chat, message board and contacts for families to learn, voice concerns and share experiences with Hydrocephalus. 
Hydrocephalus Foundation, Inc.    Providing support, educational resources and networking opportunities to patients and families affected by hydrocephalus. The Foundation also promotes related research and facilitates the training of healthcare professionals to improve patient outcome.  
National Hydrocephalus Foundation    In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD's on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.
National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Children’s Hydrocephalus Support Group    Created to provide an opportunity for parents of children with hydrocephalus to share and learn from one another in an atmosphere confidentiality and support and to become better advocates for our children through education about hydrocephalus, treatments and therapies.
Hydrocephalus Family Support Group    This site is directed towards parents of children and adults who have hydrocephalus.
Hydrocephalus Support Association (Australia)   Membership is open to any person with the condition of Hydrocephalus or an associated condition as accepted by the committee. Members will also include the family of persons suffering from Hydrocephalus or related conditions. Membership is also open to professionals and other interested persons.
Daily Strength - Hydrocephalus Support Group    Discussion boards
Hydrocephalus Support Group    A community of patients, family members and friends dedicated to dealing with Hydrocephalus, together.
Hydrophobia - see Rabies
Hyperhidrosis


Information Link
Very Sweaty Betty    Raising awareness about hyperhidrosis and offering impartial support and advice to sufferers
Hyperhidrosis Support Group (UK)   Sweating is necessary to control body temperature during times of exercise and in warm/hot surroundings. Sweating is regulated by the sympathetic nervous system. In up to 1.0% of the population, this system is revved-up and works at a very high level, causing sweating to occur at inappropriate times in specific areas of the body. This condition is known as hyperhidrosis.
I Have Hyperhidrosis    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Daily Strength - Hyperhidrosis Support Group    Discussion boards
Hyperkalemia

Information Link
Hyperkalemia Group    To help and get support from people like you.
Hyperlexia Hyperlexia Parents Network, The    Hyperlexia has characteristics similar to autism, behavior disorder, language disorder, emotional disorder, Attention Deficit Disorder, hearing impairment, giftedness or, paradoxically, mental retardation. Hearing, neurological, psychiatric, blood chemistry, speech and language and genetic evaluations can be performed to rule out other disorders but are not needed to identify Hyperlexia
Semantic Pragmatic Disorder and Hyperlexia support group on Facebook
Daily Strength - Hyperlexia Support Group     Discussion boards
Hypersomnia



Information Link
Hypersomnia is feeling sleepy throughout the day or sleeping too long at night and having trouble waking up. People with hypersomnia may fall asleep at inappropriate times, for example, at work. Hypersomnia happens sometimes because nighttime sleep is disturbed because of sleep apnea, but it can also have other causes.
Hypersomnia Forum    Information and discussion boards
I Live With Hypersomnia     Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hypertension




Information Links:

Hypertension (High      Blood Pressure)

Hypertension Treatment
American Society of Hypertension The mission of the Society is to organize and conduct educational activities designed to promote and encourage the development, advancement, and exchange of scientific information in all aspects of research, diagnosis, and treatment of hypertension,
and related cardiovascular diseases.
Pulmonary Hypertension Association    To find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.
WebMD Hypertension & High Blood Pressure Community   Information and discussion
Benign Intracranial Hypertension Support Group Networks   Now available on facebook,with many topics on the discusion boards, from flying with bih, medecation, pregnancy, weight, related dissorders, children with BIH,IIH, PTC, and much much more
    Facebook Link
Daily Strength - High Blood Pressure Support Group    Discussion boards
Hypertension Health Network     Also referred to as high blood pressure, HTN or HPN, is a medical condition in which the blood pressure is chronically elevated.
Pulmonary Hypertension Support Group    A community dedicated to dealing with Pulmonary Hypertension and Pulmonary Artery Hypertension
Primary Arterial Hypertension     Information and lists of support groups
I Have Benign Intracranial Hypertension    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Idiopathic Intracranial Hypertension Group    A community of patients, family members and friends dedicated to dealing with Idiopathic Intracranial Hypertension, together.
Hyperostosis - see Forestier Fisease
Hyperthyroidism - see Hypothyroidism (below)
Hypertrophic Cardiomyopathy


also see Cardiomyopathy
Hypertrophic Cardiomyopathy Association  The main feature of hypertrophic cardiomyopathy is an excessive thickening of the heart muscle. Heart muscle may also thicken in normal individuals as a result of high blood pressure or prolonged athletic training. Furthermore, there is a fine line between and athletic heart and a heart with HCM.
Hypertrophic Cardiomyopathy Support Group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Cardiomyopathy, Hypertrophic. You're not alone.
Hypoglycemia




Information Link
Hypoglycemia Support Foundation, The   Hypoglycemia is the body's inability to properly handle the large amounts of sugar that the average American consumes today. It's an overload of sugar, alcohol, caffeine, tobacco and stress.   Since all the cells of the body, especially the brain cells, use glucose for fuel, a blood glucose level that is too low starves the cells of needed fuel, causing both physical and emotional symptoms.
Hypoglycemia Forum - a health community featuring member and doctor discussions ranging from a specific symptom to related conditions, treatment options, medication, side effects, diet, and emotional issues surrounding medical conditions.
Hypoglycemia Support Group    Get advice and support from thousands of patients like you
Daily Strength - Hypoglycemia Support Group    Discussion boards
Hypoglycemia Support Group    A community of patients, family members and friends dedicated to dealing with Hypoglycemia, together.
I Have Hypoglycemia    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hypopituitarism The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
The Pituitary Foundation    Hypopituitarism is most often caused by a benign (i.e. not cancerous) tumour of the pituitary gland, or of the brain in the region of the Hypothalamus.
Hypopituitarism Support Group    A community of patients, family members and friends dedicated to dealing with Hypopituitarism, together.
Hypospadias Hypospadias.org       Hypospadias and epispadias are birth anomalies that result from defective development of the penis during embryological development.  Normally the urethra runs the entire length of the penis, forming an opening at the tip.  However, the penis sometimes does not form correctly and the urethra fails to reach the tip of the penis.  The incompletely developed urethra may form an opening at the under side of the penis (hypospadias) or the upper side of the penis (epispadias). 
Hypospadias & Epispadias Association     Did you know that 1 of every 125 males born in the US has hypospadias?
Hypospadias Forum UK    Message boards
Hypospadias Support Group   This group has been created to offer information, advice and support to mothers facing hypospadias. Whether you just learned your child was born with this birth defect or you are looking for advice after surgery, we can all share in this common experience.
Hypospadias Support Group    A community of patients, family members and friends dedicated to dealing with Hypospadias, together.
Hypothyroidism &
Hyperthyroidism



Information Links:

Hypothyroidism


Hyperthyroidism
The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
Thyroid Foundation of America   Your thyroid gland tells every cell in your body the rate at which it should function. Having too little hormone, called hypothyroidism, puts you into a dragging slowdown. Having too much hormone, called hyperthyroidism, races your engine, so you feel all revved up-as if you were burning out.
Living With Hypothyroidism    There are many ways that you can make living with hypothyroidism easier. First and foremost, take your medication as prescribed by your doctor. Also, you should not smoke since this can affect your thyroid.1 Some people with hypothyroidism experience insomnia and fatigue. Always try to get a full night of sleep. Eat right, exercise and drink plenty of water.    
I Have Hypothyroidism      Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Hypothyroidism Support Group     Get advice and support from thousands of patients like you
Daily Strength - Hypothyroidism Support Group    Discussion boards
Hypothyroidism Support Group    A community of patients, family members and friends dedicated to dealing with Hypothyroidism, together.
I Have Hyperthyroidism     Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more-- all free
I Beat Hyperthyroidism    Read hundreds of true stories, share your own story anonymously, get feedback and comments
Hyperthyroidism Support Group    A community of patients, family members and friends dedicated to dealing with Hyperthyroidism, together.
Daily Strength - Hyperthyroidism Support Group    Discussion boards.

Support Groups "I"


"I"


Idiopathic Thrombocytopenic Purpura Platelet Disorder Support Association      Classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more otherwise normal organ systems.  In ITP, platelets are the target.  They are marked as foreign by the immune system and eliminated in the spleen, or sometimes the liver.
ITP Support Association (UK)   To promote and improve the general welfare of people with Immune Thrombocytopenia (formerly known as Idiopathic Thrombocytopenic Purpura) by providing support and information to patients, their families, and health professionals.
Immune Deficiency


See also specific disease or condition
Immune Deficiency Foundation      The Immune Deficiency Foundation is the national non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education.
Acquired Immune Deficiency     Resources and links. not just for AIDS, inckludes other immune disorders.
Primary Immune Deficiency Diseases PDF information (2007)
Immunization Information


Information Link
The National Network for Immunization Information (NNii) provides up-to-date, science-based information to healthcare professionals, the media, and the public: everyone who needs to know the facts about vaccines and immunization.
Vaccines & Immunizations Topics    From the Centers for Disease Control and Prevention
Vaccine Information for the public and health professionals. Click on a link below for comprehensive information about a specific disease and the vaccine that prevents it. Each page includes a Q & A section, photos and/or video footage, true stories of individuals who have suffered or died from the disease, descriptions of public policies, and references to other resources
Vaccines - Myths And Facts     An overall vaccine policy is a good guide to follow, perhaps, concerned parents may like to discuss the child’s vaccination schedule with their doctors and get it tailored according to the medical history and lifestyle and circumstances of the family for still better results.
Imperforate Anus Pull-thru Network     The Pull-thru Network is a volunteer-based organization dedicated to providing education, information, support and advocacy for those individuals, and the families of those individuals, who are affected by any congenital anorectal, colorectal or urogenital disorder and any of the variety of related diagnoses.  
Imperforate Anus Support Group on FaceBook. Here for anyone affected by imperforate anus or any other form of bowel/bladder dysfunction!!, and the many asociated problems it brings, whether that be bowel management, or any associated condition kidney problems etc. each case is different.
Imperforate Anus Group    Blog and message boards. Sharing and supporting those with IA.
Impetigo



Information Link
Impetigo Support Group    A community of patients, family members and friends dedicated to dealing with Impetigo, together.
Impetigo   UK sources of information and / or support
Incontinence




Information Link:

Urinary Incontinence
National Association for Continence    NAFC is the world's largest and most prolific consumer advocacy organization dedicated to public education and awareness about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.
The Simon Foundation for Continence    Within this website you will find the help and knowledge that will motivate you to take the steps, which will lead to the solution that is right for you, and for your particular incontinence.
About Incontinence     On this site you will find support and information you can use about urgency, leakage, or incontinence.  
Incontinence Support Group on Facebook   This group is a place for supporting those who are incontinent whether its light or heavy incont. If its drip, urge, overflow, or stress incontinence we can talk about it here.
Incontinence      A forum for people who are medically incontinent. While those who are not incontinent are welcome to post here, please be respectful of those who are.
Incontinence Support Center   This site is dedicated to providing comprehensive and accurate information as well as offering support about incontinence in all it's forms.
Daily Strength - Urinary Incontinence Support Group     Discussion groups
Urinary Incontinence Support Group     A community of patients, family members and friends dedicated to dealing with Urinary Incontinence, together.
I Have Fecal Incontinence    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Fecal Incontinence Online Support Group    A community of patients, family members and friends dedicated to dealing with Fecal Incontinence, together.
Stress Incontinence Coping and Support    Mayo Clinic. Treatments today for stress incontinence can usually substantially reduce, if not eliminate, urinary leakage and help you regain control of your bladder. Still, you may need to cope with the effects of incontinence while waiting for surgery or for medication or behavior therapies to gain effectivenes
Stress Incontinence is the most common type of urinary incontinence. Women are more prone to it than men. Urine "accidents" leave many women afraid to leave home. Thanks to advances in surgery, though, incontinence is no longer a life sentence.
Impotence
(Erectile Dysfunction)



Information Link
Erectile Dysfunction happens when a man is not able to have or maintain an erection as much as he or his partner wants. If you want to know more about this problem and how it can be treated, join this online support group for erectile dysfunction. You will meet doctors and others dealing with this problem.
I Have Impotence    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Daily Strength - Impotence & Erectile Dysfunction Support Group   Discussion boards
Impotence: Support Groups (UK) Serchable database of information and support
Incontinentia Pigmentia Incontinentia Pigmenti International Foundation            A genetic disease of the skin, hair, teeth and central nervous system. The condition was named because of the way the skin looks under the microscope. The most prominent features of IP involve the skin and skin derivatives (hair, teeth, and nails). In most patients, it is a cosmetic problem only. However, some medical reports describe problems with the skeleton, brain, and other systems in the body.                  
Independent Living


Also See
Long Term Care
Disability Resources, Inc. is a national nonprofit organization that provides information about resources for independent living.  We serve thousands of individuals with disabilities through a multidisciplinary network of service providers and consumers. In order to reach as many people with disabilities as cost effectively as possible, we target our services and publications to libraries, disability organizations, independent living centers, rehabilitation facilities, educational institutions, and health and social service providers.
The Institute on Independent Living serves self-help organizations of disabled people who work for self-determination and equal opportunities; provides information, training materials and technical assistance on accessibility, personal assistance, advocacy, legislation and peer support; publishes articles, reports, manuals or comments and other materials related to Independent Living.
Independent Living USA     No mission statement.   News and information network for disabled.
Access Center for Independent Living    The mission of the Access Center for Independent Living (ACIL) is to ensure that people with disabilities have full and complete access to the community in which they reside.
The Enabling Support Foundation    There's no place like home; and we mean real homes, not nursing homes. We are fighting so people with disabilities can live in the community with real supports instead of being locked away in nursing homes and other institutions.
Independence Through Enhancement of Medicare and Medicaid The mission of the ITEM Coalition is to raise awareness and build support for policies that will improve access to assistive devices, technologies and services for people of all ages with disabilities and chronic conditions.       
Infertility





Information Link




Intrauterine       Insemination
Infertility Support, where women in all stages of their infertility battle discuss various tests and treatments they are undergoing. We hope you will find support as you meet other women experiencing difficult situations as a result of their fertility issues. While not everyone who leaves here leaves with a positive pregnancy test, we hope that you all find peace in whatever path you end up taking.
Resolve    One in eight U.S. couples of childbearing age is diagnosed with infertility. RESOLVE addresses this public health issue by providing community to these women and men, connecting them with others who can help, empowering them to find resolution and giving voice to their demands for access to all family building options.
Seeking Help For Infertility: Support Groups   If you or your partner has been diagnosed with infertility, you may be finding it particularly difficult to deal with the emotional and physical stresses that come along with a diagnosis. There are a number of resources that you can make use of to help you deal with your battle with infertility, including friends, family members, and reproductive specialists. However, it can sometimes be difficult to feel fully understood by these people. For this reason, many people dealing with infertility look to infertility support groups for help.
Infertility is rarely only a physical problem. Rather, its diagnosis can often come with a host of difficult and often disabling emotional issues, ones that affect women, men, and couples in different ways. Neglecting or discounting these issues can prove costly to one’s emotional well-being and destructive to relationships.
Infertility Support Group   Although our paths vary, we totally understand the deep emotions attached to infertility. We share our tales from the week (doctor visits, treatments, HPTs, etc.) We've become stronger.
Daily Strength - Infertility Support Group   Discussion board
Infertility Support Group    A community of patients, family members and friends dedicated to dealing with Infertility, together.
Fertility Community    Connects couples with information, support and solutions regarding their family-building options. We provide information on conception, diagnosis, infertility causes & conditions, treatments, marriage issues, pregnancy loss and other resources. We also provide resources on related topics such as adoption, foster care, parenting, pregnancy and childfree lifestyles.
Infertility Support Meetup Groups    Worldwide
Infertility Friends    Infertility Friends is India's first support group for infertility, run by infertile couples, which aims at providing infertile couples a forum where they can get together to discuss their experiences with each other, and derive strength from their collective experience.
Male Infertility  Mayo Clinic    Coping with infertility can be difficult. It's an issue of the unknown — you can't predict how long it will last or what the outcome will be. Infertility isn't necessarily solved with hard work. The emotional burden on a couple is considerable, and plans for coping can help.
Daily Strength - Male Infertility Support Group   Discussion board
Male Infertility Support    Information links and support boards
Australian Infertility Support Group is a support group for people living in Australia and New Zealand who are dealing with infertility.
Ingrown Toenail




Support Link
Ingrown Toenail Information   An ingrown toenail can result from a number of things, but poorly fitting shoes and toenails that are not trimmed properly are the most common causes. The skin along the edge of a toenail may become red and infected. The great toe is usually affected, but any toenail can become ingrown.
I Can't Get Rid Of My Ingrown Toenail     Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Insomnia



Information Links:

Insomnia

Insomnia - Sleep Aids And Stimulants
American Sleep Association    Focused on improving public awareness about sleep disorders and sleep health, promoting sleep medicine research, and providing a portal for communication between patients, physicians/healthcare professionals, corporations, and scientists.
Insomnia Solution     Seeks to provide reliable advice regarding insomnia and how to cure sleepless nights.
I Have Insomnia    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends, and so much more
Insomnia Support Group    A community of patients, family members and friends dedicated to dealing with Insomnia, together.
Daily Strength - Insomnia Support Group    Discussion boards
International Joseph Disease International Joseph Disease Foundation    Symptoms of Machado Joseph Disease most commonly begin between the ages of 15 and 40, but may appear earlier or much later in life. Progression may be fast or slow, and life expectancy ranges from 10-30 years after the disease begins. Symptoms include weakness in the arms and legs, staggering, lurching gait,easily mistaken for drunkenness, difficulty with speech and swallowing, involuntary eye movements, and frequent urination        
Interstitial Cystitis Interstitial Cystitis Network    Interstitial Cystitis Network, a publishing company dedicated to interstitial cystitis and other pelvic pain disorders. We strive to present the best research, information, and support directly into the homes and offices of our users (patients, providers & IC researchers).
Interstitial Cystitis Association    Dedicated solely to improving the quality of healthcare and lives of people living with IC. The ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by IC
IC Support Groups    In the United States
Interstitial Cystitis Support Group    A community of patients, family members and friends dedicated to dealing with Interstitial Cystitis, together.
Daily Strength - Interstitial Cystitis (IC) Support Group    Discussion boards.
Intra-Uterine Growth Retardation The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
Irritable Bowel Syndrome





Information Links:

Irritable Bowel Syndrome

Irritable Bowel Syndrome in Children
Irritable Bowel Syndrome (IBS) Self Help Group                        The Irritable Bowel Syndrome Self Help Group, established in 1987, is a patient advocate group in support of those who suffer from IBS, those who are looking for support for someone who has IBS, and medical professionals who want to learn more about IBS. The IBS Self Help and Support Group is the largest on-line community for people with Irritable Bowel Syndrome.
Irritable Bowel Syndrome Association    An organization dedicated to helping everyone who suffers from IBS through patient support groups, treatment, accurate information and education.
Irritable Bowel Syndrome Self Help and Support Group on FaceBook   We were the internet's first and continue to be the largest online community created specifically for IBS sufferers.
Irritable Bowel Syndrome Support Group on FaceBook   This group is for anyone out there suffering from IBS or those of you who know someone who suffers from it and want to give some support. This digestive disorder is fairly widespread and also quite embarassing to discuss, and it can alter someone's lifestyle and quality of life.
Daily Strength - Irritable Bowel Syndrome Support Group     Discussion boards
Irritable Bowel Syndrome Support Group   A community of patients, family members and friends dedicated to dealing with Irritable Bowel Syndrome, together.
Irritable Bowel Information & Support Association of Australia   People from all sections of the community, and all walks of life can suffer from Irritable Bowel Syndrome (IBS). Many suffer in silence, too embarrassed to seek assistance or support. If you suffer, you need to know that you are not alone.
Irritable Bowel Syndrome    Message board group
Iron Disorders Iron Disorders Institute       An iron disorder occurs when iron is out of balance in the human body.
NBIA Disorders Association    Created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation, also called Hallervorden-Spatz Syndrome.
Iron Overload Disorder Support Group Online   The purpose of this web site is to help provide extra help to those recently diagnosed with this disease, family members of those affected, and to help those who feel that they are alone in this "venture" into life.
IsoDicentric 15 IsoDicentric 15 Exchange Advocacy & Support      People born without an extra chromosome but who have a segment of duplicated material within chromosome 15 are said to have an interstitial duplication chromosome 15.  there can be differences in the way their hearts, kidneys, or other body organs are formed.    
Itching



Information Links:

ItchItching

Anal Itching
I Think Itching Is Worse Than Pain    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends
Itching Forum    Discussion boards
Anal Itching Group    to help and get support from people like you.
I Itch    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends

Support Groups "J"


"J"


Jakob-Creutzfeldt Disease see Creutzfeldt-Jakob Disease
Jaw Disorders (TMJ) Jaw Joints & Allied Musculo-Skeletal Disorders FoundationWorks in promoting awareness, prevention, research, and knowledge of the Jaw Joints to whole body health. The disorder to the TemporoMandibular Joints is mostly known as “TMJ Disorders”. TMJ is one of the most pervasive, least understood and controversial health disorders in existence today.
Temporomandibular Joint Disorders Online Health Community and Support Group   Through this group, you can get TMJ information, share experiences about TMJ, connect with peers, and get answers to your questions from health professionals.
TMJ Association   You don't have to suffer from these disorders yourself to empathize and support those that do.  Friends, family members, co-workers and managers: everyone has a role in supporting sufferers and demanding effective research and treatments for TMJ Disorders.
Bruxism / Tooth Grinding / Jaw Clenching / Teeth Clenching / Parasomnia    Join our online support group for people coping with bruxism. Ask your questions to experts, share your experiences, and learn more.
Jet Lag




Information Link:
Jet Lag
I Really Hate Jet Lag   Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends
Jet Lag from Better Health  Jet lag is more severe when travelling in an easterly direction. Tips to manage jet lag include limiting alcohol and caffeine, drinking plenty of water, naps and walking around the plane cabin regularly.
Jet-Lag Comes With Forgetfulness (Article)    "Jet lag changes the brain, which causes memory and learning problems even after a regular schedule is resumed according to psychologists at the University of California, Berkeley. "
Jeune Syndrome Jeune’s Syndrome Family Foundation    The mission of Jeune’s Family Foundation is to offer A LITTLE HELP through our monetary assistance program to the families of children who need it most, and to offer A LOT OF SUPPORT including emotional assistance and connections to the latest medical information for all.
I Have Jeune Syndrome    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends
Jock Itch


Information Link
Recurring Jock Itch and Intertrigo    Discussion boards from WebMD
Joint Replacement



Information Links:

Total Hip Replacement

Total Knee Replacement

Replacement Surgery Of The Hand
WebMD Knee & Hip Replacement Community   Message boards
Knee Joint Replacement Support Group Questions   To help and get support from people like you.
Knee Joint Replacement Support Group  Discussion boards
Ankle Joint Replacement from Yahoo Groups.   This is a support group for anyone who has any experience with ankle joint replacements. We welcome doctors, nurses, physical therapists, caregivers and most of all patients. Let's discuss common concerns and draw on each other's experiences. We are here to support one another on our journey to wholeness and wellness.
Joint Replacement Surgery: Information for Multicultural Communities    Infromation from the National Institute of Arthritis and Musculoskeletal and Skin Diseases
The Joint Support Arthritis Community connects patients, families, friends and caregivers for support and inspiration
Totally Hip Support Group   The #1 online support group for those interested in hip joint problems
Dailt Strength - Degenerative Joint Disease Support Group   Discussion boards.
Hip Replacement Support Group on FaceBook   The aim of this group is to build a positive & strong community on Facebook that supports, guides and provides Hip Replacement Patients of all ages, with the most complete and valuable information to help them clarify their doubts & start building a better quality of life.
Joseph Disease International Joseph Disease Foundation    Symptoms of Machado Joseph Disease most commonly begin between the ages of 15 and 40, but may appear earlier or much later in life. Progression may be fast or slow, and life expectancy ranges from 10-30 years after the disease begins. Symptoms include weakness in the arms and legs, staggering, lurching gait,easily mistaken for drunkenness, difficulty with speech and swallowing, involuntary eye movements, and frequent urination        
Joubert Syndrome Joubert Syndrome Foundation    A rare, genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by absence or underdevelopment of the part of the brain called the cerebellar vermis and a malformed brain stem. The most common features of the disorder include lack of muscle control, an abnormal breathing pattern called hypernea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur.   
I Have Joubert Syndrome   Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends
Joubert Syndrome Support on Yahoo Groups  The Joubert Syndrome Yahoo! group serves as a forum for sharing personal stories, therapy experience, behavioral and social issues. Users also pose questions to other users regarding issues that may arise as children with Joubert Syndrome & Related Cerebellar Disorders grow and learn.

 


Support Groups "K"


"K"


Kabuki Syndrome Kabuki Syndrome Network      The name "Kabuki make-up" was selected because of the facial resemblance to the makeup of actors in Kabuki, traditional Japanese theatre. The arched eyebrows, thick eyelashes, eversion of the lateral lower lid, and long palpebral fissures (the measurement from inner to outer corner of eye) all contributed to this resemblance, especially in children of Asian descent.
I Have Kabuki Syndrome   Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friend
Supporters of Kabuki Syndrome on FaceBook   We support the children & adults with Kabuki Syndrome. We also support Kabuki Syndrome research.
Supporting Aussie Kids with Kabuki Syndrome    Some of us throw ourselves into research and support groups after learning about the diagnosis, and some of us quietly go about our lives - but all of us deal with the diagnosis very differently. Both parents will look at the diagnosis differently, as will relatives and friends.
Australian Kabuki Syndrome Association   This web site has been primarily produced for the people with Kabuki syndrome and their family to reduce isolation, provide support and a source for communication
Kawasaki Disease


Information Link
Kawasaki Disease Foundation    Uniting the personal insight of families with the expertise of medical professionals. The illness that involves the skin, mouth, and lymph nodes, and typically affects children who are under the age of 5. The cause is unknown, but if the symptoms are recognized early, kids with the disease can fully recover within a few days. If it goes untreated, it can lead to serious complications that can involve the heart. 
Kawasaki Disease Support Group on FaceBook   This group was started to inform and support parents and families who are dealing with this illness. Kawasaki is such an unknown and uninformed disease. Together we are trying to help make the medical communityand families more aware of the early signs.
Kawasaki Disease Canada     To promote the awareness of Kawasaki Disease among the medical community, childcare providers, and the general public, that is critical to early diagnosis and treatment."
Kawasaki Support Group (UK)     Helping with research and gathering information about the illness and the children affected is very important to us.  We collate the information about the children, their families and their illness using a questionnaire for parents. 
Kawasaki Disease    More common among the Japanese, the disease afflicts children and is a distinctive clinical illness characterized by fever and rash. It can result in serious complications involving the heart, causing large thrombosis, and even leading to death.
Keratosis Pilaris



Information Link:

Keratosis Pilaris
KeratosisPilaris.org Keratosis Pilaris is a very common genetic follicular disease manifested by the appearance of rough bumps on the skin. Primarily, it appears on the back and outer sides of the upper arms, but can also occur on thighs and buttocks or any body part except palms or soles.
Keratosis Pilaris Community    The keratosis pilaris message board community offers you the opportunity to connect online with others. By getting involved in the discussions, you will meet other KP sufferers who understand and share similar experiences.
Keratosis Pilaris Support Group on FaceBook    A place for KP sufferers to complain, share information, and determine whether or not anything actually helps.
Keratoconus




Information Link:

Keratoconus
National Keratoconus Foundation    A thinning disorder of the cornea that causes distortion and reduced vision.  The National Foundation is an outreach program that provides information and support to persons diagnosed with keratoconus.  It publishes a newsletter, distributes patient information booklets, provides physician referrals, helps start local support groups and maintains this website for patient information and discussion. 
Keratoconus Australia    We provide support for people with keratoconus and their families through regular group meetings, help lines, individual counseling and the dissemination of information.
UK Keratoconus Self Help and Support Association    We work to raise awareness and provide information and support for people with keratoconus in the UK.
Trinidad and Tobago Keratoconus Group      This group has been set up to support and provide information for those who have keratoconus and raise awareness of the condition both here in TnT and throughout the Caribbean
I Have Keratoconus    Read true personal stories, chat & get advice, support and help from a group of 8 people who all say 'I Have Keratoconus'
Keratoconus Support Group   A community of patients, family members and friends dedicated to dealing with Keratoconus, together.
Daily Strength - Keratoconus Support Group   Discussion boards
Kidney Disease including Cancer





Information Links:

Kidney Cancer

Hemodialysis

High Blood Pressure Related Kidney Disease

Kidney Disease and Diabetes

Kidney Failure

Kidney Stone

Kidney Transplant

Kidney Cysts
National Kidney Foundation    The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
American Association of Kidney Patients (AAKP)     The American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients.  We strive to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients.
American Kidney Fund         Nearly one-fifth of American dialysis patients received financial help from the American Kidney Fund in 2006. AKF was founded in 1971, to help a single individual with kidney failure pay for dialysis. Thirty-six years later, AKF has become the leading source of direct financial aid to chronic kidney disease patients across the nation. In 2006, AKF served more than 63,500 patients, distributing $81.9 million in grants.   
DaVita Patient Citizens    DPC is dedicated to improving the quality of life for people with chronic kidney disease and those on dialysis. Through education and involvement we can all make a difference.
National Kidney Cancer Association    The Kidney Cancer Association is made up of patients, family members, physicians, researchers, and other health professionals.  We fund, promote, and collaborate with other institutions on research projects.  We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels.
NephCure Foundation         Committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis. NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.          
Hereditary Leiomyomatosis Renal Cell Cancer Family Alliance HLRCC is one of several familial syndromes involving kidney cancer.
PKD Foundation    Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide. Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment.
Kidney Disorders Community    Suffering from a kidney disorder or know someone who is? From kidney stones to renal failure, get answers and support here.
Daily Strength - Polycystic Kidney Disease Support Group    Discussion boards
Polycystic Kidney Disease Support Group  A community of patients, family members and friends dedicated to dealing with Polycystic Kidney Disease , together.
Kidney Stones Support Group   A community of patients, family members and friends dedicated to dealing with Kidney Stones, together.
Kidney Stones or renal stones are gravel-like collections of chemicals that may appear in any area of the urinary system, from the kidney to the bladder. Extremely painful, these stones may be small or large, single or multiple.
I Have Kidney Stones    Kidney Stones anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Kidney Stones.
Daily Strength - Kidney Stones Support Group  Discussion boards
Kleine-Levin Syndrome




Information Link
Kleine-Levin Syndrome Foundation    Kleine-Levin Syndrome is a rare complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily.
UK Kleine Levin Syndrome Support Group   On FaceBook.   For people in the UK who suffer or know someone that suffers from Kleine Levin Syndrome.
I Have Kleine Levin Syndrome    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, and meet new friends
Klinefelter Syndrome




Information Link
Klinefelter Syndrome Support     Klinefelter syndrome is a genetic disorder that occurs in males who have three or more sex chromosomes. At least two of the chromosomes must be X chromosomes, and one must be a Y chromosome. The condition causes males to have some female-like physical features. 
American Association for Klinefelter Syndrome Information and Support (AAKSIS) A national volunteer association with the mission of education, support, research, and understanding of 47 XXY and its variants, collectively known as Klinefelter syndrome.
KS&A  KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.  We endeavor to fulfill this mission of satisfying unmet needs and improving the lives of individuals and families affected by X and Y chromosome aneuploidies including 47XXY, Klinefelter syndrome, Trisomy X, XYY syndrome and associated conditions.
Klinefelter Syndrome Support Group   A community of patients, family members and friends dedicated to dealing with Klinefelter syndrome, together.
Daily Strength - Klinefelter's Syndrome Support Group     Discussion boards
Klippel-Feil Syndrome Klippel Feil Support   "This is a website to provide information and support for adults with Klippel-Feil syndrome. This site includes information about me, what Klippel-Feil syndrome is, links, and an online support group."
Klippel-Feil Syndrome Support Group   A community of patients, family members and friends dedicated to dealing with Klippel-Feil Syndrome, together.
Madisons Foundation    Dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians and medical experts.
I Have Klippel-feil Syndrome    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends
Klippel-Trenaunay Syndrome Klippel-Trenaunay Support Group     The K-T syndrome is a rare congenital malformation that may include the following: port-wine stain or birthmark, soft tissue and bony hypertrophy, venous malformations, and lymphatic abnormalities. Complications may include bleeding, cellulitis, venous thrombosis, or pulmonary embolism. Associated abnormalities in other systems, such as gigantism of toes, hand and feet anomalies, lymphedema, or involvement of the abdominal and pelvic organs may also occur. 
Klippel Trenaunay Weber Syndrome Support Group   On Facebook   The goal here is to help & support one another by offering experience & knowledge, guidance & understanding - first hand! Instead of trying to deal with it through black & white text & medical jargon!
Daily Strength - Klippel-Trenaunay-Weber Syndrome Support Group    Discussion Boards
Krabbe Disease Krabbe's Kids           Krabbe disease involves the white matter of the central and peripheral nervous systems. Early symptoms include feeding difficulties, gastroesophageal reflux, irritability, and clasped thumbs. Later symptoms include hypertonicity followed by hypotonicity, flaccidity, deafness and blindness. In the infantile form, there is rapid mental deterioration, which usually leads to death before the age of two.
Hunter's Hope    Established in 1997 by Pro Football Hall of Fame member Jim Kelly, and his wife, Jill, after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly's life long commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment. Their ultimate goal is to raise money to fund research efforts to identify new treatments, therapies, and a cure for Krabbe and other leukodystrophies.
I Have Krabbe Disease    Read hundreds of true stories, share your own story anonymously, get feedback and comments, chat in the discussion forum, help others, meet new friends

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