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Organizations


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American Foundation for Urologic Disease


Anaphylaxis Foundation and Anaphylaxis Network of Canada
offers product alerts and registry for product recalls and research and advocacy data.

Beryllium Support Group
information about chronic beryllium disease (CBD).

Canadian Bacterial Diseases Network


Canadian Organization for Rare Disorders
committed to the enhancement of the lives of all persons affected by rare disorders.

Children Afflicted with Lymphatic Malformations - CALM
organization of parents and children afflicted with lymphatic malformations. Offers information, support, medical references, and encourages research to improve treatment.

Coeliac Society
U.K. society offers information and advice on coeliac disease.

Dystonia Medical Research Foundation
works to increase an understanding of dystonia through research, awareness, and support.

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.

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.

Global Fund to Fight AIDS, Tuberculosis, and Malaria
works to mitigate the impact caused by HIV/AIDS, tuberculosis, and malaria in countries of need.

Histiocytosis Association of America Virtual Offices
online support for patients with histiocytosis their family and friends.

Hughes Syndrome Foundation
offers details of antiphospholipid syndrome and its treatment, research, and the foundation.

International Adhesions Society


International Immunocompromised Host Society
Offering a multidisciplinary forum for scientific and clinical interchange to improve management of Immunocompromised Patients.

International Pelvic Pain Society


International Society for the Study of Cough
Promotes research in cough and encourages the exchange of ideas and information.

Irritable Bowel Syndrome (IBS) Self Help Group
including a bulletin board, library, and web ring.

Klippel-Trenaunay Support Group
provides information about the group and about syndrome, and to provide families, adults with K-T, and professionals with links.

Langer-Giedion Syndrome Association
international support organization for people and families living with Langer-Giedion Syndrome and related disorders.

Lois Joy Galler Foundation
acquires the funds needed to conduct research and develop methods of preventing or curing Hemolytic Uremic Syndrome (HUS).

Magic Foundation
provides support services for the families of children afflicted with chronic and/or critical disorders, syndromes, and diseases that affect a child's growth.

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
supporting research of bone marrow diseases.

Myoclonus Research Foundation


National Aphasia Association
aphasia is an impairment of the ability to use or comprehend words - often a result of stroke or head injury.

National Association for Down Syndrome (NADS)
news, resources, and scientific information related to down syndrome from NADS, a not-for-profit organization serving people in the Chicago metropolitan area.

National Association for Incontinence


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 Gaucher Foundation


National Keratoconus Foundation
general information keratoconus, an ailment of the eye.

National Organization for Rare Disorders (NORD)
voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare 'orphan diseases.'

National Pediculosis Association
national clearing house on head lice and scabies issues.

National Reye's Syndrome Foundation, Inc.
provides research and awareness for this liver disease.

Nevus Network
support group for individuals with giant congenital nevi and their families.

Parent to Parent of Georgia, Inc.
provides support and information to parents who have a child with a disability or special health care need.

Patient Organization for Primary Immune Deficiencies (IPOPI)
chat, conferencing, member organizations around the world, great resources on the various immune deficiency diseases.

Pituitary Tumor Network Association
dedicated to support, pursue, encourage, promote, and, where possible, fund research on pituitary tumors in a sustained and full-time effort to find a cure for pituitary diseases.

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
interdisciplinary association for the advancement of rehabilitation and assistive technologies.

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.

Stevens Johnson Syndrome Foundation
provides medical communities and the public with information and support.

The American Hyperacusis Association
Dedicated to increasing public and professional awareness of hyperacusis and its diagnosis, evaluation, and management.

The Hormone Foundation
Promotes the prevention, diagnosis, and treatment of hormone-related conditions and diseases.

The Melungeon Health Education and Support Network
Dedicated to the health of Melungeon descendants who have one or more of the five major Mediterranean illnesses, including Behçet's Syndrome and Sarcoidosis.

The National Pancreas Foundatio
Committed to advancing education and research related to diseases of the pancreas, including pancreatitis and pancreatic cancer.

Tourette Syndrome Association of New Jersey, Inc.
offering information and support groups.

Transverse Myelitis Association
not-for-profit organization providing support to families affected by TM.

Wobblers Anonymouse
support group for those damaged by gentamicin. Symptoms include oscillopsia and loss of balance.

Worldwide Society of Wolfram Syndrome Families
support gro

 




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