- National Organization for Rare Disorders (NORD)
 - Voluntary health organisations dedicated to providing information on the prevention, treatment, and cure of rare "orphan diseases." - Family Caregiver Alliance
- Info, education and services for families and professionals who care for adults with cognitive disorders, including Alzheimer's, stroke, Parkinson's, brain injury, brain tumors, Huntington's, and other brain impairments.
- Med Help International
- Providing medical information and advice via an online patient network and question and answer forums staffed by doctors.
- Lupus Foundation of America@
- Working to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure.
- Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
- Interdisciplinary association for the advancement of rehabilitation and assistive technologies.
- National Pediculosis Association
- National clearing house on head lice and scabies issues.
- National Aphasia Association
- Promotes education, research, and services for people with aphasia and their families. Includes facts about the condition, news, and links to support groups.
- National Association for Incontinence
- Office of Rare Diseases (ORD) NIH
- Offers information on over 6000 rare diseases including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
- Dystonia Medical Research Foundation
- Works to increase an understanding of dystonia through research, awareness, and support.
- Global Fund to Fight AIDS, Tuberculosis and Malaria, The
- Works to mitigate the impact caused by HIV/AIDS, tuberculosis, and malaria in countries of need.
- National Association for Down Syndrome (NADS)
- News, resources, and scientific information related to down syndrome from NADS, a not-for-profit organisation serving people in the Chicago metropolitan area.
- Magic Foundation
- Provides support services for the families of children afflicted with chronic and critical disorders, syndromes, and diseases that affect a child's growth.
- International Foundation for Functional Gastrointestinal Disorders
- Provides information on IBS, GERD, abdominal or pelvic pain, bowel incontinence, and other GI disorders.
 Coeliac Society
- U.K. society offers information and advice on coeliac disease.- National Phobics Society
- Endeavours to promote the relief and rehabilitation of persons suffering with anxiety disorders through information and provision of self-help services.
- Irritable Bowel Syndrome (IBS) Self Help Group
- Including a bulletin board, library, and web ring.
- Hormone Foundation, The
- Promotes the prevention, diagnosis, and treatment of hormone-related conditions and diseases.
- Anaphylaxis Foundation and Anaphylaxis Network of Canada
- Offers product alerts and registry for product recalls and research and advocacy data.
- National Tay-Sachs & Allied Diseases Association@
- Learn about National-Tay Sachs & Allied Diseases Association, which aims to fight and cure Tay-Sachs, Canavan, and related genetic diseases and support affected families. Sites offer organisation information, research initiative, clinical trials, message board, and various chapters.
 Aware
- Voluntary organisation that aims to assist that section of the population whose lives are directly affected by depression.- National Reye's Syndrome Foundation, Inc.
- Organisation aims to educate and create awareness about Reye's syndrome and the risks involved using aspirin and salicylate among children. Also supports research for this brain and liver disease.
- National Keratoconus Foundation
- General information keratoconus, an ailment of the eye.
- International Pelvic Pain Society
- Changing Faces
- Resources for health and social care professionals and families about the psycho-social aspects of facial disfigurement.
- Cleft Lip and Palate Association (CLAPA)
- Provides information and support to new parents and people with the condition and their families.
- Tuberous Sclerosis Association, The (UK)
- Supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis (TSC).
- National Gaucher Foundation
- Society for Light Treatment and Biological Rhytms - SLTBR
- Dedicated to fostering research, professional development, and clinical applications in the fields of light therapy and biological rhythms.
- Patient Organization for Primary Immune Deficiencies (IPOPI)
- Chat, conferencing, member organisations around the world, great resources on the various immune deficiency diseases.
- Transverse Myelitis Association
- Not-for-profit organisation providing support to families affected by TM.
- Klippel-Trenaunay Support Group
- Provides information about the group and about syndrome, and to provide families, adults with K-T, and professionals with links.
- Primary Immunodeficiency Association
- Catch up on the latest news and information and air your views in the chat room.
- Canadian Organization for Rare Disorders
- Committed to the enhancement of the lives of all persons affected by rare disorders.
- Melungeon Health Education and Support Network, The
- Dedicated to the health of Melungeon descendants who have one or more of the five major Mediterranean illnesses, including Behçet's Syndrome and Sarcoidosis.
- Friends' Health Connection
- Connects people who are currently experiencing or who have overcome the same disease, illness, handicap or injury in order to communicate for mutual support.
- Hughes Syndrome Foundation
- Offers details of antiphospholipid syndrome and its treatment, research, and the foundation.
- National Eosinophilia-Myalgia Syndrome Network
- Supporting EMS sufferers and their families and working to increase public awareness of the illness caused by consumption of contaminated L-tryptophan supplements.
- National Pancreas Foundation, The
- Committed to advancing education and research related to diseases of the pancreas, including pancreatitis and pancreatic cancer.
- Parent to Parent of Georgia, Inc.
- Provides support and information to parents who have a child with a disability or special health care need.
- Medsupport: Friends Supporting Friends
- Provides 24 hr. support on the net via forums, chats, information, newsletters and articles in text and real audio, pen pals, members stories, and our own television show.
- Mia Hamm Foundation
- Raises funds and awareness for bone marrow transplant patients and continues the growth in opportunities for young women in sport.
- Wobblers Anonymouse
- Support group for those damaged by gentamicin. Symptoms include oscillopsia and loss of balance.
- National Sarcoidosis Resource Center
- Provides information about sarcoidosis, including physicians and health providers in your area. Also assists with locating support groups and fellow sufferers.
- Histiocytosis Association of America Virtual Offices
- Online support for patients with histiocytosis their family and friends.
- International Adhesions Society
- Beryllium Support Group
- Information about chronic beryllium disease (CBD).
- Nevus Network
- Home of the Congenital Nevus Support Group. Offers educational material and emotional support for those with congenital nevi and/or neurocutaneous melanosis (NCM).
- Canadian Bacterial Diseases Network
- Take the Lead
- Take the Lead is a nonprofit organisation "dedicated to provide direct services, support and care for all qualified participants in the sport of dogs who suffer from the devastating realities of life-threatening or terminal illnesses."
- Myoclonus Research Foundation
- Lois Joy Galler Foundation
- Acquires the funds needed to conduct research and develop methods of preventing or curing Hemolytic Uremic Syndrome (HUS).
- Daily Strength
- Online community of anonymous and free support groups for issues ranging from mental health to cancer to children's health and parenting. Member profiles feature journal entries, photos, biographies, and networking.
- Cody Unser First Step Foundation
- Not-for-profit corporation aimed at raising research funds to fight paralysis and build awareness of Transverse Myelitis.
- Australian Pituitary Foundation
- Supports research and disseminates information for the medical community, the public, pituitary patients, and their families. Includes news and contacts.
- Pituitary Society, The
- Seeks to further the understanding of diseases of the pituitary gland.
- Disfigurement Guidance
- Information on treatments, literature, compensation and other services and facilities concerning disfigurement guidance and skin camouflage.
- Stiff Man Syndrome Foundation
- Nonprofit foundation organised because of the terrifying experiences of Chris Geilman who suffers from the rare disorder.
- Langer-Giedion Syndrome Association
- International support organisation for people and families living with Langer-Giedion Syndrome and related disorders.
- Children Afflicted With Lymphatic Malformations - CALM
- Organisation of parents and children afflicted with lymphatic malformations. Offers information, support, medical references, and encourages research to improve treatment.
- Sotos Syndrome Support Association
- Provide a social support environment for professionals and families of individuals affected by Sotos Syndrome so they can meet, exchange ideas and help one another cope with the condition
- Worldwide Society of Wolfram Syndrome Families
- Support group for a rare disease.
- Brachial Plexus Palsy Foundation
- Nonprofit organisation dedicated to raising awareness of brachial plexus palsy, a birth injuring that affects children, and providing resources for affected families.
- International Society for the Study of Cough
- Promotes research in cough and encourages the exchange of ideas and information.
- Ollier's Disease Self-Help Group
- Diastasis Symphysis Pubis British Support Group
- Purine Metabolic Patients' Association (PUMPA)
- Charity supporting families with members suffering from purine metabolic diseases.
- PBC Foundation, The
- Charity supporting sufferers of the Liver Disease Primary Biliary Cirrhosis.
- Acoustic Neuroma Association NSW Inc.
- Supports patients, families, medical professionals, organisations, and the community, and informs them about this condition also called vestibular schwannoma.
- National Enuresis Society
- Features clips, news, and information for parents, kids, teens, and medical professionals.
- Foundation for Sarcoidosis Research
- Nonprofit organisation which supports scientific research on sarcoidosis and its cure, and strives to provide improved understanding of the disease and its causes. Based in Chicago, Illinois.
- Lewy Body Society, The
- U.K.-based nonprofit organisation dedicated to raise awareness of dementia with Lewy bodies amongst the public, to assist patients and professionals, as well as to support research into the disease.
- Nothing But Nets Campaign
- Nothing But Nets is a grassroots campaign to prevent malaria by raising awareness and funds to purchase and distribute bed nets and save lives.
- Stevens Johnson Syndrome Foundation
- Provides information and support to the medical communities and the public.
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