- 11q Research and Resource [IA][Direct] -
Parent, researcher support organization for children with structural abnormalities of the 11th chromosome including opportunity to participate in research.
- Achromatopsia Network, The [IA][Direct] -
Information/support network for individuals and families concerned with the rare inherited vision disorder achromatopsia.
- American Prophyria Foundation [IA][Direct]
- Anencephaly Support Foundation [IA][Direct]
- Aplastic Anemia Foundation of America, Inc. [IA][Direct] -
Assists patients and families dealing with aplastic anemia, myelodysplastic syndromes.
- Brachial Plexus Palsy Foundation [IA][Direct] -
Non-profit organiization dedicated to raising awareness of brachial plexus palsy, a birth injuring that effects children, and providing resources for affected families.
- Canadian Bacterial Diseases Network [IA][Direct]
- Canadian Malignant Hyperthermia Association [IA][Direct] -
Dedicated to informing health care providers, patients and the general public in malignant hyperthermia.
- CDG Syndrome, what is that? [IA][Direct] -
Site of the CDG Society; contains information about Carbohydrate Deficient Glycoprotein syndrome, an inherited metabolic disease; in Swedish, English and German. Scientific references.
- Center for Health Studies [IA][Direct] -
Research focuses on prevention, treatment of common problems in primary care, medications, mental health and cancer.
- Centre for Comparative Infectious Diseases [IA][Direct] -
Multidisciplinary centre for the study of infectious diseases, with links to other infectious diseases sites.
- Children Afflicted with Lymphatic Malformations - CALM [IA][Direct] -
Organization of parents and children afflicted with lymphatic malformations offering informmation support,medical references and ecouraging research into improved treatment.
- Circle of Friends
 [IA][Direct] -
Support group for ALL autoimmune diseases. Members get together via e-mail to share life experiences, humor, coping, venting and fears. - Cornelia de Lange Syndrome Foundation [IA][Direct]
- Disfigurement Guidance [IA][Direct] -
Information on treatments, literature, compensation and other services and facilities concerning disfigurement guidance and skin camouflage.
- Dystonia Medical Research Foundation [IA][Direct] -
Information on an illness dominated by involuntary spasms and muscle contractions that induce abnormal movements and postures
- European Pressure Ulcer Advisory Panel [IA][Direct]
- Family Caregiver Alliance [IA][Direct] -
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 [IA][Direct] -
Connects people who are currently experiencing or who have overcome the same disease, illness, handicap or injury in order to communicate for mutual support.
- Guillain Barre Syndrome Association [IA][Direct] -
Support and information to sufferers of Guillain Barre Syndrome as well as their family and friends.
- Histiocytosis Association of America Virtual Offices [IA][Direct] -
Online support for patients with histiocytosis their family and friends.
- Human Growth Foundation [IA][Direct] -
Helps individuals with growth-related disorders, their families, and healthcare professionals through education, research and advocacy.
- Hyperlexia [IA][Direct] -
A pervasive developmental disorder with autistic-like symptoms, but with a strong visual ability to decode and a precocious ability to read.
- IBS Self Help Group [IA][Direct]
- Infectious Diseases Society of New Jersey [IA][Direct]
- Johns Hopkins Medical Institutions InfoNet [IA][Direct] -
List of phone numbers for a variety of patient advocacy organizations; also includes some WWW links.
- Klippel-Trenaunay Support Group [IA][Direct] -
Provides information about the group and about syndrome, and to provide families, adults with K-T, and professionals with links.
- Let's Face It [IA][Direct] -
Self help group for the facially different.
- Lupus Foundation of America@ (1996)
- Lupus Foundation of America@ (1997)
- Lyme Disease Network of NJ, Inc.@ (1997)
- Lyme Disease Network of NJ, Inc.@ (1996)
- Medsupport: Friends Supporting Friends [IA][Direct] -
Medical and emotional support and education for the disabled. Newsletter, bulletin board, articles. Supporting those with Multiple Sclerosis, Fibromyalgia, Chronic Fatigue and other disabilities.
- National Aphasia Association [IA][Direct]
- National Association for Down Syndrome (NADS) [IA][Direct] -
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 [IA][Direct]
- National Enuresis Society [IA][Direct]
- National Hemophilia Foundation [IA][Direct] -
Dedicated to the cures of inherited bleeding disorders and the prevention and treatment of their complications.
- National Keratoconus Foundation [IA][Direct] -
General information keratoconus, an ailment of the eye.
- National MPS Society [IA][Direct] -
For Mucopolysaccharide disorders. Society history, activities and membership information.
- National Pediculosis Association [IA][Direct] -
National clearing house on head lice and scabies issues.
- National Tay-Sachs & Allied Diseases Association@ (1997)
- Neutropenia Support Assoc. Inc [IA][Direct] -
A registered non-profit charity to increase awareness and understanding.
- Nevus Network
 [IA][Direct] -
Support group for individuals with giant congenital nevi and their families. - NORD (National Organization for Rare Disorders, Inc.) [IA][Direct] -
Voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare "orphan diseases."
- Nystagmus Action Group [IA][Direct] -
Information on the eye disorder.
- NYU Center for the Study and Treatment of Movement Disorders [IA][Direct]
- Ollier's Disease Self-Help Group [IA][Direct]
- Parent to Parent of Georgia, Inc. [IA][Direct] -
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) [IA][Direct] -
Chat, conferencing, member organizations around the world, great resources on the various immune deficiency diseases.
- PBC Foundation, The [IA][Direct] -
Charity supporting sufferers of the Liver Disease Primary Biliary Cirrhosis.
- Pituitary Tumor Network Association [IA][Direct] -
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.
- Pseudofolliculitis Barbae Sufferers of America [IA][Direct] -
To educate the public about "razor bumps," a disease which afflicts many men, and promote the only 100%-effective cure - growing a beard.
- Sarcoidosis Research Institute [IA][Direct] -
A non-profit, tax-exempt organization dedicated to increasing our knowledge of the disease sarcoidosis.
- Society for Light Treatment and Biological Rhytms - SLTBR [IA][Direct]
- Tuberous Sclerosis International [IA][Direct] -
World organisation of national TS associations.
- Waldenstrom's Macroglobulinemia Support Group [IA][Direct] -
An international support group composed of individuals who have Waldenstrom's Macroglobulinemia and their family members.
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