Support Groups A - B
How to Use -- Contents
Slightly Creaky does extensive 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 web 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.
Links to Support Group:
Alphabetical List: |
Quick Links to selected categories: |
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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 | ||
| Have We Missed a Support Group or Ailment? We are constantly looking for more information and more links. Please help us improve our site and service. The Internet had millions of web pages dedicated to medical conditions and support groups; we can only sample a few of them. If you know any sites we should include write to suggestions@slightlycreaky.com | |||
Caution - Proceed with care. Slightly Creaky is not responsible for the content of web sites listed here nor the actions taken by the people owning, managing, or participating on them.
This listing is the result of more than 500 hours of research. It is the property of Slightly Creaky and may not be reproduced in any form. Every attempt has been made to provide an accurate description of each organization.
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Updates: We review and update this page every 4 months. Many support groups change names or even terminate their services. Should you discover a bad link or wish to suggest that we add one, please contact suggestions@slightlycreaky.com
We try to avoid commercial sites, but in many cases they are the only ones who provide information and support. If you are looking to buy or sell medical products, please use a generalized search engine.Support Groups "A" to "Al"
"A" through "Al"
| Abdominal Aortic Aneurysm | Legs For Life Legs For Life is a national screening program for Peripheral Arterial Disease (PAD), Abdominal Aortic Aneurysm (AAA), Carotid/Stroke, and Venous Disease. |
| Abortion Information | |
| Accessibility | The Paciello Group The Paciello Group is dedicated to helping government agencies, technology vendors, e-commerce corporations, and educational institutions make their technology equally accessible to all people, including those with disabilities. The company offers professional consulting, technology solutions, and monthly monitoring services to ensure that clients reach all audiences effectively and efficiently while meeting governmental and international standards. |
| Achromatopsia | Achromatopsia Network Congenital achromatopsia is a rare hereditary vision disorder which affects 1 person in 33,000 in the U. S. Persons who have achromatopsia do not have normal "cone vision." In the retinas of normal eyes there are 6 million cone photoreceptors, located mostly at the center of the retina. Persons with achromatopsia are either totally colorblind or almost totally colorblind, and they have poor visual acuity. |
| Acne | Acne Assassin. "I decided to become a dermatologist and specialize in acne and also received a degree in psychology. I now help other people control there acne, going to high school heath classes to inform teens about the facts. Just remember you can control acne so don’t let it control you!!" |
| Acoustic Neuroma | Acoustic Neuroma Association ANA is a patient member organization, providing information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves |
| Acromegaly | Daily Strength DailyStrength.org is the largest, 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. |
| Acute Respiratory Distress |
ARDS Support Center Acute Respiratory Distress Syndrome (ARDS) is an acute, severe injury to most or all of both lungs. Patients with ARDS experience severe shortness of breath and often require life support because of respiratory failure. ARDS is not a specific disease; instead, it is a type of severe, acute lung dysfunction that is associated with a variety of diseases, such as pneumonia, shock, sepsis (a severe infection in the body) and trauma. |
| Addison's Disease | NADF. "It is our goal to find a cure for Addison's Disease - a way to prevent it in future generations, while continuing to improve the lives of those already affected by it. But research is expensive. " |
| Daily Strength DailyStrength.org is the largest, 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. | |
| Adenoid Cystic Carcinoma | Adenoid Cystic Carcinoma Research Foundation The Adenoid Cystic Carcinoma Research Foundation supports research into Adenoid Cystic Carcinoma that will improve therapies and accelerate a cure for the disease. Adenoid cystic carcinoma is a rare cancer, typically originating in the salivary glands. Its course is both slow and persistent, leading to a relatively favorable prognosis on a five-year horizon, but a poor prognosis beyond 10 years, often due to metastasis to the lungs and liver. |
| Adenylosuccinate Lyase Deficiency |
Purine Research Society When we consider the many different roles purines play in our metabolism, it is not surprising that the diseases of purine metabolism are as varied, ranging from asymptomatic conditions, which are only discovered accidentally, to disorders with severe neurological abnormalities, which are ultimately fatal. As with other metabolic diseases, each disorder is caused by a defective gene which results in an enzyme with too little or too much catalytic activity. |
| Adrenal Diseases | National Adrenal Diseases Foundation The National Adrenal Diseases Foundation is a non-profit organization dedicated to providing support, information and education to individuals having Addison's disease as well as other diseases of the adrenal glands. |
| Adrenal Hyperplasia | Adrenal Hyperplasia Organization CAH is a genetic defect of the adrenal glands. A person with CAH will not be able to produce several vital hormones known as corticosteriods. CAH is treated with hormone replacement, replacing one or both of the hormones missing, generally with Cortef and Florinef. Living with CAH requires extra attention to common illnesses and stress inducing situations (injury, exercise, etc.) |
| 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. | |
| Adrenoleuko- dystrophy | ALD LIFE (UK) Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. In this disorder, the fatty covering (myelin sheath) of nerve fibres in the brain is lost, and the adrenal gland degenerates, usually leading to progressive neurological disability and death. |
| Adult Polyglucosan Body Disease |
APBD Research Foundation Our mission is to improve the diagnosis and treatment of Adult Polyglucosan Body Disease, support individuals and families affected by the disease and increase awareness of APBD among health professionals and the public. |
| Advocacy | Self Advocates Becoming Empowered Our goals include making self-advocacy available in every state including institutions, high schools, rural areas and people living with families with local support and advisors to help; working with the criminal justice system and people with disabilities about their rights within the criminal justice system; and closing institutions for people with developmental disabilities nationwide, and build community supports. |
| Special Needs Advocate for Parents SNAP serves over 6,000 organizations and families in the special needs community with educational seminars on special needs estate planning, referrals, and networking opportunities as well as offering medical insurance problem-solving education and services. | |
| Am. Assoc. on Intellectual and Developmental Disabilities AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. | |
| The Center on Human Policy, Law, and Disability Studies A network of academic programs, centers, student organizations, and affiliated faculty whose research, teaching, and advocacy seeks to promote the rights of people with disabilities locally, nationally, and globally, and to facilitate a critical examination of disability as an aspect of diversity in society. | |
| Bazelon Center For three decades, the Judge David L. Bazelon Center for Mental Health Law has been the nation's leading legal advocate for people with mental disabilities. Our precedent-setting litigation has outlawed institutional abuse and won protections against arbitrary confinement. Our advocacy has opened up public schools, workplaces, housing and other opportunities for people with mental disabilities to participate in community life. | |
| Center for the Study and Advancement of Disability Policy CSADP provides public education, leadership development and training, technical assistance and information dissemination, and conducts action-research and analysis of public policy issues affecting individuals with disabilities and their families. | |
| Job Accommodation Network JAN is a free consulting service designed to increase the employability of people with disabilities by: 1) providing individualized worksite accommodations solutions, 2) providing technical assistance regarding the ADA and other disability related legislation, and 3) educating callers about self-employment options. | |
| World Institute on Disability WID is a nonprofit research, public policy and advocacy center dedicated to promoting the civil rights and full societal inclusion of people with disabilities. WID's work focuses on: employment and economic development; accessible health care and Personal Assistance Services; inclusive technology design; and international disability and development. Over half of the staff are people with disabilities and are respected national leaders in the disability field as well as in industry, government and social services. | |
| The Office of Disability Employment Formerly The President's Committee on Employment of People with Disabilities, we seeks to facilitate communication, coordination, and promotion of public and private efforts to enhance employment of people with disabilities. | |
| TASH is an international membership association leading the way to inclusive communities through research, education, and advocacy. TASH members are people with disabilities, family members, fellow citizens, advocates, and professionals working together to create change and build capacity so that all people, no matter their perceived level of disability, are included in all aspects of society. " | |
| Aicardi Syndrome | Aicardi Syndrome Foundation Our mission is to improve the diagnosis and treatment of Adult Polyglucosan Body Disease, support individuals and families affected by the disease and increase awareness of APBD among health professionals and the public. |
| Aicardi-Goutières syndrome. | International Aicardi-Goutières Syndrome Association Aicardi-Goutieres syndrome is a progressive disease that affects the brain and the immune system, causing brain atrophy and loss of white matter in the brain. A child is born with this syndrome; most cases known are very severe. The syndrome is often mistaken for a pre-natal virus, but it is actually inherited genetically. There are many families with multiple children affected. It is classified as a leukodystrophy because it affects the myelin, or white matter, of the brain. |
| Alagille Syndrome | Alagille Syndrome Alliance The purpose of the Alliance is to serve as the main networking resource and source of information for people with AGS, their families, friends, and health care providers. Alagille syndrome (AGS) is a complex multisystem disorder involving primarily the liver, heart, eyes, face, and skeleton. The major clinical manifestations of AGS are cholestasis, characterized by bile duct paucity on liver biopsy; congenital cardiac defects, primarily involving the pulmonary arteries; posterior embryotoxon in the eye; typical facial features; and butterfly vertebrae. Renal and central nervous abnormalities also occur. Mortality is approximately 10%, with vascular accidents, cardiac disease, and liver disease accounting for most of the deaths. |
| 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. | |
| Albinism | NOAH (US) The Albinism World Alliance (AWA) is a network of albinism support groups in various countries. Albinism is a comparatively rare genetically inherited group of condition which results in a reduction or complete lack of pigment (colour) in the skin, hair and eyes of people with the condition. This can result in pale skin which burns easily in the sun, virtually white hair, very severe short-sight and photophobia (a severe sensitivity to light). There are two types of albinism, that which affects the skin, hair and eyes (oculo-cutaneous albinism) and that which affects just the eyes (ocular-albinism). |
| Daily Strength DailyStrength.org is the largest, 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. | |
| Alcoholism | Sober Recovery People do recover, every single day. From alcoholism and drug addiction, dual diagnosis, abuse and trauma, overeating, gambling, codependency and more, people do get better. They rarely do it alone. If help is what you seek, we hope you'll find it here. |
| AA: Alcoholics Anonymous Main site for AA: Alcoholics Anonymous, a self-supporting group of men and women who wish to recover from alcoholism and alcohol abuse | |
| Al-Anon and Alateen For over 50 years, Al-Anon (which includes Alateen for younger members) has been offering hope and help to families and friends of alcoholics. | |
| ACOA: Adult Children of Alcoholics ACOA: Adult Children of Alcoholics is a 12-step, 12-tradition program of women and men who grew up in alcoholic or otherwise dysfunctional homes. | |
| Allergies | World Allergy Organization The World Allergy Organization is an international umbrella organization whose members consist of 74 regional and national allergology and clinical immunology societies from around the world. By collaborating with member societies, WAO provides direct educational outreach programs, symposia and lectureships to members in 92 countries. WAO also sponsors scientific symposia in developing areas throughout the world and jointly sponsors postgraduate programs on allergy and clinical immunology during professional, non-allergy association congresses. |
| Alopecia areata | National Alopecia Areta Foundation Alopecia areata is a highly unpredictable, autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. This disease affects approximately 1.7 percent of the population overall, including more than 5 million people in the United States. The disease can have a profound impact on one's life and functional status, both at work and at school. In alopecia areata, the affected hair follicles are mistakenly attacked by a person's own immune system (white blood cells), resulting in the arrest of the hair growth stage. Alopecia areata usually starts with one or more small, round, smooth bald patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis). Alopecia areata occurs in males and females of all ages and races; however, onset most often begins in childhood and can be psychologically devastating. Although not life-threatening, alopecia areata is most certainly life-altering, and its sudden onset, recurrent episodes, and unpredictable course have a profound psychological impact on the lives of those disrupted by this disease. |
| Alpha-1 Antitrypsin Deficiency | Alpha One Foundation Alpha-1 Antitrypsin Deficiency is a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children & adults. |
| AlphaNet AlphaNet, Inc. is a not-for-profit, organization founded in 1995 by three individuals with Alpha-1 antitrypsin deficiency. AlphaNet is devoted to improving the lives of individuals with Alpha-1 antitrypsin deficiency through comprehensive disease management services, clinical research administration, and consultative services. The organization also funds research and community activities. | |
| Alpha-1 Advocacy Alliance Our mission is to improve the health and well being of those affected by Alpha-1 through support to patients, educating healthcare professionals and advancing public policy for the Alpha-1 Community. Alpha-1 antitrypsin is a protein produced by the liver to protect the human body from damage caused by neutrophil elastase. Neutrophil elastase is an enzyme released by white blood cells during times of inflammation and infection and is necessary in digesting damaged cells and bacteria. When A1AD is not available to neutralize this enzyme, the body tissues are damaged. | |
| Children’s Liver Disease Foundation C.L.A.S.S. is a -volunteer, nonprofit organization dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation. Our goal is to be both a service to families and a valuable resource for the medical community. | |
| Alport Syndrome | Daily Strength DailyStrength.org is the largest, 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. |
| Alström Syndrome | Alström Syndrome International Alström Syndrome is progressive. The first sign observed in infants is usually extreme light sensitivity (photophobia) and a wobbling of the eyes (nystagmus). Another of the first signs MAY be dilated cardiomyopathy and congestive heart failure in infants under 1 year of age. Children rapidly gain weight during their first year and become obese as young children. Later, multiple organ systems in the body can be affected resulting in blindness, hearing impairment, type 2 diabetes, heart failure, liver disease, urological dysfunction, pulmonary fibrosis, and renal failure. |
| Alveolar Capillary Dysplasia | Alveolar Capillary Dysplasia Association ACD is an abnormal development of the alveolar beds in the lungs. All reported cases had an initial diagnosis of Primary Pulmonary Hypertension of the Newborn (PPHN). Problems quickly develop in these newborns because of their inability to shift from fetal circulation to newborn circulation. The newborn system compensates by increasing blood pressure to the lungs. There are a few characteristics which these rare infants have in common. These are more often than not full term deliveries resulting from uncomplicated pregnancies. |
| Alzheimer's Disease | Alzheimer's Association Alzheimer’s (AHLZ-high-merz) disease is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer’s progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations. |
| Alzheimer’s Research Foundation Alzheimer’s disease is a neurological disorder characterized by a steady decline in cognitive ability. It is the most common form of dementia. There are several stages of the illness and some people may develop the early-onset form of the disease. In the United States, nearly 5 million citizens currently suffer from Alzheimer’s disease. Worldwide assessments place the total number of dementia cases between 20 and 30 million. With humans living longer, experts predict that the number of people Alzheimer’s affects will triple by 2050. | |
| 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. | |
| National Endowment for Alzheimer's Research NEAR has a particular interest in the latest genetic approaches to diagnosis and treatment of Alzheimer's disease. Through a combination of genetic screening technologies and gene therapy, the underlying causes of Alzheimer's can be fully addressed. | |
| American Health Assistance Foundation "Funds research seeking cures for Alzheimer’s disease, age-related macular degeneration and glaucoma, and provides the public with information about risk factors, preventative lifestyles, available treatments and coping strategies." | |
Support Groups "Am" to "Az"
"Am" through "Ar"
| Amnesia | Daily Strength DailyStrength.org is the largest, 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. |
| Amputees | Amputee Resource Foundation of America The Amputee Resource Foundation of America recognizes the crucial role of current, accurate information pertaining to all aspects of amputation management and amputee rehabilitation in assisting in the process of assimilating amputees back into society and returning many to the workplace. Easily accessible, accurate information about amputation and the consequences thereof have been severely lacking for many decades. However, recent advances in technology can now provide access to timely information and resources heretofore unavailable to many. |
| Amputee Online This multi-award winning WEB Site is designed primarily to help out amputees on a peer to peer basis. However, friends and families of amputees, doctors, prosthetists, teachers, PE instructors, physical therapists or anyone wanting to know more about amputation, will benefit from using this site. | |
| ASCOT-World A Support Group & Social Club for Amputees | |
| Activeamp.org There's a lot to do out there. There are a lot of ways to exercise your need to sweat or to compete or just to play. So put down the damn remote, turn off the TV and go do something.Then go teach the kids they're OK, too. | |
| Amputee Coalition of America Whether you are facing amputation for the first time, or have lived with limb loss for years, the Amputee Coalition of America provides a wealth of information for and about amputees. If you have recently had a limb amputated or are preparing for one, please search the library for “New Amputee Information” and contact ACA’s National Limb Loss Information Center (NLLIC) to receive a free information packet-- we are here to help you! | |
| Amyloidosis | Daily Strength DailyStrength.org is the largest, 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. |
| Amyotrophic Lateral Sclerosis | ALS Association Whether you are facing amputation for the first time, or have lived with limb loss for years, the Amputee Coalition of America provides a wealth of information for and about amputees. If you have recently had a limb amputated or are preparing for one, please search the library for “New Amputee Information” and contact ACA’s National Limb Loss Information Center (NLLIC) to receive a free information packet-- we are here to help you! |
| A.L.S. Family Charitable Foundation Several years ago, we started this Foundation in hopes of creating a brighter future for those living with A.L.S. Because we know the realities of the disease, we have made it our life's work to eradicate A.L.S. We proudly offer several great programs designed to enhance the lives of those that we seek to support. We owe a great deal to our wonderful volunteers and benefactors that are now part of our "family". | |
| World Fed. of Neurology Amyotrophic Lateral Sclerosis Sponsored by the World Federation of Neurology Research Group on Motor Neuron Diseases to link researchers and clinicians worldwide with the goal of finding effective treatment and a cure for ALS. | |
| Amyotrophic Lateral Sclerosis Association The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA covers all the bases - research, patient and community services, public education, and advocacy - in providing help and hope to those facing the disease. The mission of The ALS Association (ALSA) is to find a cure for and improve living with amyotrophic lateral sclerosis. | |
| Fight ALD ALD is a disease that effects boys and is usually misdiagnosed or goes undetected for so long that chances of treatment or survival are minimal. This genetic disease is often passed from mother to son, and daughters may become carriers. Survivors of this disease have symptoms like ADD/ADHD. | |
| Les Turner ALS Foundation The Les Turner ALS Foundation began with one patient and a dream; today it serves more than 550 patients annually and its membership is comprised of people living with ALS their friends and families, healthcare professionals, researchers and corporate leaders | |
| Anal Stenosis | Making Contact |
| Androgen Insensitivity | Androgen Insensitivity Syndrome Support Group Alström Syndrome is progressive. The first sign observed in infants is usually extreme light sensitivity (photophobia) and a wobbling of the eyes (nystagmus). Another of the first signs MAY be dilated cardiomyopathy and congestive heart failure in infants under 1 year of age. Children rapidly gain weight during their first year and become obese as young children. Later, multiple organ systems in the body can be affected resulting in blindness, hearing impairment, type 2 diabetes, heart failure, liver disease, urological dysfunction, pulmonary fibrosis, and renal failure. |
| Anemia | Fanconi Anemia Research Fund FA occurs equally in males and females. It is found in all ethnic groups. Though considered primarily a blood disease, it can affect all systems of the body. Many patients eventually develop acute myelogenous leukemia (AML) and at a very early age. FA patients are extremely likely to develop head and neck, gynecological, and/or gastrointestinal squamous cell carcinomas, again at a much earlier age than in squamous cell carcinoma patients in the general population. Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problem associated with FA still must have regular examinations to watch for signs of cancer. |
| Daily Strength DailyStrength.org is the largest, 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. | |
| Iron Disorders Institute An iron disorder occurs when iron is out of balance in the human body. | |
| Anencephaly | Anencephaly Stories "You are not alone in carring your child with Anencephaly to term.This is what Lucas' mom has to say to parents who have been given the adverse prenatal diagnosis of Anencephaly:" |
| Anencephaly Information "Information about the birth defect anencephaly. Help for affected parents, caregivers, family and friends. " Available in 8 languages. | |
| Angelman Syndrome | Angelman Syndrome Foundation USA Angelman Syndrome is a rare neuro-genetic disorder It is characterised by intellectual and developmental delay, speech impediment, sleep disturbance, unstable jerky gait, seizures, hand flapping movements, frequent laughter/smiling and usually a happy demeanor. AS is a classic example of genetic imprinting caused by deletion or inactivation of critical genes on the maternally inherited chromosome 15. |
| Anger Management | Daily Strength DailyStrength.org is the largest, 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. |
| Angina | American Heart Association Our mission is to reduce disability and death from cardiovascular diseases and stroke. |
| AngioEdema | Hereditary AngioEdema Association Hereditary angioedema (HAE) is a rare, potentially fatal genetic disorder typified by a deficiency or dysfunction of the plasma protein C1 Inhibitor, and characterized clinically by swelling of the extremities, face, trunk, abdominal viscera, and upper airway1. Abdominal attacks can cause severe pain, and mortality from edema induced airway closure |
| Angioma | Angioma Alliance Angioma Alliance is a non-profit international voluntary health organization created by people affected by cavernous angioma (cerebral cavernous malformations). Our mission is to improve the quality of life for those affected by cerebral cavernous malformations through education, support, and promotion of research. |
| Ankylosing Spondylitis | KickAS.org Ankylosing spondylitis (AS) is a rheumatic disease that causes arthritis of the spine and sacroiliac joints and can cause inflammation of the eyes, lungs, and heart valves. It varies from intermittent episodes of back pain that occur throughout life to a severe chronic disease that attacks the spine, peripheral joints and other body organs, resulting in severe joint and back stiffness, loss of motion and deformity as life progresses. |
| Anophthalmia | International Children's Anophthalmia Network (ICAN) Anophthalmia is a medical term used to describe the absence of the globe and ocular tissue from the orbit. Anophthalmia and microphthalmia(small eyes) are used interchangeably since in most cases CT Scans show some remnants of either the globe or surrounding tissue. Anophthalmia/ microphthalmia (A/M) may affect one eye with the other eye being normal, or both eyes, resulting in blindness. |
| Antiphospholipid Antibody Syndrome – see Hughes Syndrome | |
| Anxiety Disorders | Anxiety Disorders Association of America (ADAA) Anxiety Disorders are the most common mental illness in the U.S., with 40 million (18.1%) of the adult U.S. population (age 18 and older) affected. Anxiety disorders cost the U.S. more than $42 billion a year, almost one third of the $148 billion total mental health bill for the U.S. More than $22.84 billion of those costs are associated with the repeated use of healthcare services, as those with anxiety disorders seek relief for symptoms that mimic physical illnesses. People with an anxiety disorder are three-to-five times more likely to go to the doctor and six times more likely to be hospitalized for psychiatric disorders than non-sufferers. |
| Anxiety and Panic Support Groups Links to sites that provide support, reinforcement, and information. | |
| National Anxiety Foundation This website is intended for educational information only. Treatment for anxiety disorders is not a do it yourself' project. If you believe, after reading this, that you might have an anxiety disorder, you should see your physician who can either diagnose and treat you, or refer you to a specialist. | |
| National Mental Health Association Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives | |
| Apert 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. |
| Aphasia | Aphasia Hope Foundation Aphasia is a speech/language disorder that impairs a person's ability to communicate. It is most commonly the result of a stroke but can occur from any severe head injury. |
| Aplastic Anemi | Aplastic Anemia & MDS International Foundation, Inc. Aplastic anemia occurs when the bone marrow stops making enough blood-forming stem cells. The symptoms of aplastic anemia can include increased bleeding, bruising, petechiae, susceptibility to infections, shortness of breath, fatigue, decreased alertness, dizziness and lingering illness. |
| Arachnoiditis | Circle Of Friends With Arachnoiditis Adhesive Arachnoiditis is a disorder which causes severe, chronic, intractable pain. It is the inflammation of one of the spinal cord coverings (meninges), the middle meninges, the arachnoid and nerve roots that causes Adhesive Arachnoiditis. This inflammation causes the covering to become "sticky", adhering it to the spinal cord and the nerve roots as they exit the spinal canal. The inflammation causes the nerve roots to become adherent to each other and to the meninges, this is what causes the pain. Adhesive Arachnoiditis can be progressive in some cases. It can also cause loss of motor function, numbness, tingling, loss of bladder and bowel function, the sensation of walking on rocks or glass, burning, groin pain and can, in some rare instances, cause paralysis. There is currently NO CURE and NO TREATMENT for Adhesive Arachnoiditis other than pain management. |
| Arthritis | Arthritis Foundation While often referred to as if it were a single disease, arthritis is actually an umbrella term used for a group of more than 100 medical conditions that collectively affect nearly 46 million adults and 300,000 children in America alone. While the most common form of arthritis - osteoarthritis - is most prevalent in people over 60, arthritis in its various forms can start as early as infancy. |
| American Juvenile Arthritis Organization (AJAO) AJAO is a council of the Arthritis Foundation devoted to serving the special needs of children, teens and young adults with childhood rheumatic diseases and their families. Its members are parents, family members, doctors, nurses, occupational and physical therapists, social workers, young adults and anyone with an interest in arthritis in young people. | |
| Arthritis Society, The The Arthritis Society offers a wide range of programs and resources dealing with arthritis. These services, including the examples below, can benefit people with arthritis as well as family members and caregivers.(Canada) | |
Support Groups "As" to "Az"
"As" through "Az"
| Asbestosis | Daily Strength DailyStrength.org is the largest, 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. |
| Mesothelioma Web: "A mesothelioma diagnosis can be overwhelming, and we are here to answer any questions you might have, and to help you take the steps necessary to find the options that are best suited to your individual needs." | |
| Ascities | 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. |
| Asperger's Syndrome | Asperger Syndrome Education Network ASPEN provides families and individuals whose lives are affected by Autism Spectrum Disorders (Asperger Syndrome, Pervasive Developmental Disorder-NOS, High Functioning Autism), and Nonverbal Learning Disabilities with: Education about the issues surrounding the disorders. Support in knowing that they are not alone, and in helping individuals with ASD's and NLD achieve their maximum potential. Advocacy in areas of appropriate educational programs, medical research funding, adult issues and increased public awareness and understanding. |
| Joshua Center The Joshua Child and Family Development Center supports programs designed to improve the lives of individuals and families living with Tourette Syndrome, Asperger Syndrome, Obsessive Compulsive Disorder and their Associated Disorders through research, education, social and clinical programs. | |
| AHA Association is a New York organization providing support and information for families, individuals and professionals affected by Aspergers Syndrome, High Functioning Autism, and Other Pervasive Developmental Disorders. | |
| OASIS Online Asperger Syndrome Information & Support(Jpoined with MAAP Services) This web site provides articles, educational resources, links to local, national and international support groups, sources of professional help, lists of camps and schools, conference information, recommended reading, and moderated support message boards. | |
| Asthma | Asthma and Allergy Foundation of America Asthma is a disease of the lungs in which the airways become blocked or narrowed causing breathing difficulty. This chronic disease affects nearly 20 million Americans. Asthma is commonly divided into two types: allergic (extrinsic) asthma and non-allergic (intrinsic) asthma. |
| Allergy and Asthma Network Mothers of Asthmatics What is asthma? Are allergies serious? Do I have to find a new home for my dog? How do I find a good doctor? As you stroll through the streets of Breatherville and step inside any of its buildings, you’ll find answers to your questions, concerns, and fears. You’ll learn to minimize asthma and allergy symptoms and prevent flare-ups…and have a little fun along the way, too! Meet our citizens, learn your way around, and come back often. Our creative hometown approach to asthma and allergies is like nothing you’ve ever seen. | |
| American Academy of Allergy, Asthma, and Immunology There are key differences between severe asthma and milder forms of the disease. And those differences could have implications for the management of the most at-risk and hard-to-treat patients. In most cases, asthma can remain well controlled with medication. But 5% to 10% of asthma patients suffer from a severe form of the disease that does not respond well to treatment. These patients have a higher risk of asthma-related hospitalization and death, but it has not been clear if there are unique features about severe asthma that cause patients to be sicker. | |
| American Lung Association As part of our American Lung Association® community, you have the benefits of in-depth and timely information on lung issues including asthma, tobacco control, and environmental health | |
| Ataxia | A-T Children's Project Ataxia-telangiectasia is a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, and the first signs of the disease usually appear during the second year of life. These first signs are usually a "wobbly" lack of balance and slurred speech caused by "ataxia," which means a lack of muscle control. The onset of this ataxia marks the beginning of progressive degeneration of a part of the brain, known as the cerebellum, that gradually leads to a general lack of muscle control, and eventually confines the patient to a wheelchair. Because of the worsening ataxia, children with A-T lose their ability to write, and speech also becomes slowed and slurred. For most (about 70 percent) of children with A-T there is another clinical hallmark: immunodeficiency that usually brings recurrent respiratory infections. In many patients, these infections can become life threatening. |
| National Ataxia Foundation The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education, and research. | |
| 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. | |
| Atherosclerosis | International Atherosclerosis Society promotes, at an international level, the advancement of science, research and teaching in the field of atherosclerosis and related diseases. To access content on athero.org you must be a registered user and you must log on. |
| Atypical Hemolytic Uremic Syndrome (HUS) | 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. |
| AudioVisual Assistance | Assistive Media Assistive Media is a non-profit entity that produces on-line audio recordings of literary works free-of-charge for persons with text-reading or other access disabilities |
| Captioned Media Program The Captioned Media Program provides more than 4,000 open-captioned videos free for loan to U.S. citizens with a hearing loss. | |
| Autism | Autism Society of America Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. |
| Autism National Committee (AUTCOM) This is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. | |
| Autism Speaks Few disorders are as devastating to a child and his or her family. Instead of Little League games and sleepovers, most people with autism will face lifelong supervision and care, exhausting a family's financial and emotional resources. The nation's fastest-growing serious developmental disorder, autism now affects 1 in 150 children in the United States, | |
| Autistic Society Our mission is to unite parents, families, friends, people with Autism and professionals by creating a strong, supportive community worldwide. Sharing first hand knowledge, information, news and research about Autistic Spectrum Disorders. | |
| Any Baby Can, Inc. Every child deserves to be accepted, appreciated, and loved; receive proper nutrition, adequate health care, education, and all the things that will give him or her a chance for a healthy life. | |
| National Mental Health Association Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives. | |
| Autoimmune Diseases | Autoimmune Diseases Support Group "Inspire connects patients, families, friends, caregivers and health professionals for health and wellness support. Inspire works with trusted health partners to build safe and secure health and wellness groups." |
| CIDPUSA the worlds largest foundation on autoimmune diseases and operate a advanced medical center for autoimmune diseases in Lahore. Committed to providing the widest possible selection of services, support, to assist and allow you to live your life to the fullest. You only live once, time flies by, this earth is small and your life span even smaller. | |
| Autoimmune Hepatitis | 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. |
Support Groups "B" to "Bo"
"B" through "Bo"
| Back Pain | 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. |
| Back Pain Support Group This web-site has been set-up as an alternative to the many other "corporate" health-related sites out there, whose restrictions and moderation limitations too greatly stifle the open exchange of valuable information between us fellow back pain sufferer's. | |
| Barth syndrome | Barth Syndrome Foundation Barth syndrome is a serious X-linked genetic disorder, primarily affecting males. The characteristics consist of the following: A weak heart muscle usually associated with enlargement of the heart. A reduction in a type of white blood cell that is most important for fighting bacterial infections. All muscles, including the heart, have a cellular deficiency which limits their ability to produce energy. During childhood most affected individuals are below-average in height and weight. |
| Batten 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. |
| Batten Disease Support and Research Association Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal. | |
| Bed Wetting | Bed Wetting AB/DL This site is to be used by people with a bed wetting problem. We know it isn't fun to wet the bed and we want to do our best to help you through this time in your life. |
| Behçet's Disease | American Behcets Disease Association Behçet's disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies' own tissues. The exact cause of Behçet's disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. |
| Bell’s Palsy | Bell’s Palsy Bell's palsy is a temporary weakness or paralysis of the muscles on one side of the face. These muscles are controlled by the facial nerve. Because there's a facial nerve on each side of a person's face, and Bell's palsy usually affects just one nerve, people with Bell's palsy will most likely notice stiffness or weakness on one side of the face. |
| Bereavement | Good Grief Center Each of us will experience grief at some time in our lives. While it is a universal experience, it is also a unique one. There is no specific process, no healing formula, no right way to manage grief. However, there are healthy, effective ways to cope. We are dedicated to helping people through these especially difficult times |
| M.I.S.S. Foundation If you are a family member experiencing the death of a child, we extend our deepest empathy. There simply are not words to express the depth of the sorrow...we are here to share the pain and we want you to know that we will walk with you. | |
| SHARE - Pregnancy and Infant Loss Support The mission of Share Pregnancy and Infant Loss Support, Inc. is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life. | |
| Biliary Atresia | 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. |
| Bipolar | Dealing With BiPolar Disorder With bipolar disorder, life can be like an emotional roller coaster. One day your mood is low and you feel sad. Then your mood gets really high and you feel great. |
| Child & Adolescent Bipolar Foundation The Child and Adolescent Bipolar Foundation is a parent-led organization of families raising children diagnosed with, or at risk for, pediatric bipolar disorder. | |
| Harbor of Refuge This site was created to serve people who are receiving appropriate medical treatment for their bipolar illness, including appropriate medications. We also welcome affected friends and family members of people with bipolar illness. Our greatest strength is the peer to peer support we offer one another. | |
| Depression and Bipolar Support Alliance We work to relieve and to prevent this treatable condition by providing information and support services. We also campaign to raise awareness amongst the general public about the realities of depression. | |
| Icarus Project, The We are a website community, support network of local groups, and media project created by and for people struggling with bipolar disorder and other dangerous gifts commonly labeled as "mental illnesses." We believe that when we learn to take care of ourselves, the intertwined threads of madness and creativity can be tools of inspiration and hope in a repressed and damaged world. Our goal is to help people like ourselves feel less alienated, and to allow us—both as individuals and as a community—to tap into the true potential that lies between brilliance and madness. | |
| Silver Lining We are devoted to the individuals and their family and friends who have been affected by this illness. We know all too well what this disorder is about. We live it every day. | |
| National Mental Health Association Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives | |
| National Alliance for the Mentally Ill NAMI is the nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families who join together to meet the NAMI mission through advocacy, research, support, and education. | |
| Birth Defects | Genesis Fund The Genesis Fund is a nonprofit organization that raises money for the specialized care and treatment of New England area children born with birth defects, mental retardation and genetic diseases. One of the major goals is to provide state-of-the-art, coordinated, humanistic care to these patients. |
| March of Dimes Our mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birth weight | |
| Teratology Society The Teratology Society is a multidisciplinary scientific society founded in 1960, the members of which study the causes and biological processes leading to abnormal development and birth defects at the fundamental and clinical level, and appropriate measures for prevention. Teratology is the study of the causes and treatment of birth defects | |
| Association of Birth Defect Children, Inc. ABDC provides information to ures that may cause birth defects, resources, and support groups. | |
| Bleb Nevus Syndrome | Blue Rubber Bleb Nevus Treatments (No support group can be found - if you know of any please contact us.) This page provides general information and links. |
| Blindness – see Vision | |
| Bloom’s Syndrome | Bloom's Syndrome Foundation Bloom's Syndrome is a very rare inherited genetic disorder, caused by a gene that does not function properly. This creates an unusually high number of breaks or instability along their chromosomes (the structures in the cells of our body that contain our hereditary material - called DNA). This instability causes short stature, immune system deficiencies leading to frequent respiratory and bronchial infections, patchy facial skin colorations, sensitivity to sunlight, sterility, and worst of all, an extraordinarily high risk to develop many cancers and leukemia, at early ages. |
| Bone Cancer | Adult Bone Cancer Survivors We are a group of adults from all over the world who have been diagnosed with bone sarcoma, a type of cancerous tumor that invades bone. These tumors make up less than 1% of the cancer cases diagnosed each year, and they tend to occur in children and adolescents. |
Support Groups "Br" to "Bz"
"Br" through "Bz"
| Bradykinesia | 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 |
| Brain Aeurysm | Brain Aneurysm Foundation, The Being diagnosed with a brain aneurysm is frightening. Having survived a ruptured aneurysm is a very difficult experience to have gone through and can be extremely unsettling. Gathering information about your condition can help ease this fear, help begin the healing process, and help bring a sense of comfort and support during a trying time. |
| Brain Injury | Brain Injury Association of America The Brain Injury Association of America is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury. Together with its network of more than 40 chartered state affiliates, as well as hundreds of local chapters and support groups across the country, the BIAA provides information, education and support to assist the 5.3 million Americans currently living with traumatic brain injury and their families. |
| B.I.R.D. The term "brain injury" covers a huge variety of conditions. At BIRD, we make no distinction between types of brain injury and aim to treat people of all ages and all levels of severity. Many people with brain injury are born with the problem due to genetic reasons or complications during pregnancy and birth. Other people suffer trauma during their life from accidents, assaults and natural disorders such as strokes. | |
| Headway (UK) "Headway UK provides support to the local Groups and Branches and helps to deliver high quality services through guidance on policies, procedures, standards and training." | |
| International Brain Injury Association (IBIA) IBIA is dedicated to the development and support of multidisciplinary medical and clinical professionals, advocates, policy makers, consumers and others who work to improve outcomes and opportunities for persons with brain injury. | |
| Think First Each year an estimated 500,000 persons sustain brain and spinal cord injuries in the United States. The most frequent causes of these injuries are motor vehicle crashes, falls, sports and recreation, especially diving, and violence. Children and teens are at high-risk for these devastating injuries, many of which are preventable. ThinkFirst, the National Injury Prevention Programs award-winning public education efforts target this high-risk age group | |
| Brain Tumor | Brain Tumour Action (UK) BTUK is a self-help news and discussion group for patients, careers and others affected by a brain tumour |
| Childhood Brain Tumor Foundation founded by families, friends and physicians of children with brain tumors. Our mission is to raise funds for scientific research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected. | |
| American Brain Tumor Association The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families. | |
| Making Headway Foundation Making Headway’s mission is to provide comfort and care to the children with brain and spinal cord tumors and their families as they undergo the fear, anxiety and stress of hospitalization, surgery, chemotherapy and radiation treatments. We do this through the many programs we fund at the New York University Medical Center to make the hospital stay more comfortable. These programs enhance the excellent medical care provided by the doctors, nurses and staff. | |
| Rose Meadow Farm Rose Meadow Farm is a unique, assisted living facility for people with acquired brain injury (including neurological injuries such as stroke) and/or spinal cord injury. Our mission at Rose Meadow Farm is to provide each resident with the dignity and self-respect that we all expect to receive, and to assist each resident individually to attain the highest quality of life possible. | |
| National Brain Tumor Foundation (also Brain Tumor Society)Being diagnosed with a brain tumor is a difficult experience. This website can help you cope by offering information about brain tumors and treatment, malignant and benign brain tumors, brain tumor medical centers, the latest brain tumor clinical trials as well as connecting you to a network of brain tumor survivors. "National Brain Tumor Society brings together the best in brain tumor research and supportive patient services. We offer hope to patients, families, and caregivers during every stage of the treatment journey. We invest wisely and strategically in innovative research that will lead to advances and ultimately to a cure." | |
| Breast Cancer | National Alliance of Breast Cancer Organizations National network of Breast Cancer Organizations. |
| Network of Strength Network of Strength has been a trusted resource for 30 years and has helped thousands find the information they need to make educated decisions. From articles on our Web site to the knowledge of our YourShoes peer counselors on the 24/7 Hotline, Network of Strength keeps you informed. | |
| Celebrating Life Foundation The Celebrating Life Foundation was established on May 3, 1995. It is one of the leading foundations in the nation that promote breast cancer awareness specifically targeting African American women and women of color | |
| Living Beyond Breast Cancer As a national education and support organization, our goal is to improve your quality of life and help you take an active role in your ongoing recovery or management of the disease, regardless of educational background, social support or financial means. We hope the information and support offered on this site brings you comfort, empowers you to ask questions and enables you to make sound choices about healthcare that will help you manage a breast cancer diagnosis, through treatment and beyond. | |
| John W. Nick Foundation A non-profit organization focused on educating the public about the dangers of male breast cancer. | |
| Making Memories Breast Cancer Foundation The goal of Making Memories Breast Cancer Foundation is to grant wishes to people who have been diagnosed with terminal breast cancer. | |
| National Breast Cancer Coalition The National Breast Cancer Coalition is the nation's largest breast cancer advocacy group with hundreds of member organizations and tens of thousands of individual members. | |
| Young Survival Coalition The Young Survival Coalition is the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 and under. The YSC also serves as a point of contact for young women living with breast cancer. | |
| Susan G. Komen Breast Cancer Foundation Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world. | |
| National Breast Cancer Foundation The National Breast Cancer Foundation mission is to save lives by increasing awareness of breast cancer through education and by providing mammograms for those in need. | |
| Inflammatory Breast Cancer Research Foundation Inflammatory breast cancer is the most aggressive form of breast cancer. In the US, IBC affects younger women disproportionately and African-American women are diagnosed with IBC at significantly younger ages than Caucasian-American women. | |
| Brittle Bone | Children's Brittle Bone Foundation, The The mission of the Children's Brittle Bone Foundation is to provide funds for research into the causes, diagnosis, treatment, prevention, and eventual cure for Osteogenesis Imperfecta (OI), while supporting programs which improve the quality of life for people afflicted with OI, promote awareness and educate the public. |
| Burns | 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. |
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