- Acoustic Neuroma Association NSW Inc.
Supports patients, families, medical professionals, organisations, and the community, and informs them about this condition also called vestibular schwannoma.
www2.tpgi.com.au/users/bcrowe
- Anaphylaxis Foundation and Anaphylaxis Network of Canada
Offers product alerts and registry for product recalls and research and advocacy data.
www.anaphylaxis.org
- Australian Pituitary Foundation
Supports research and disseminates information for the medical community, the public, pituitary patients, and their families. Includes news and contacts.
www.pituitary.asn.au
- Beryllium Support Group
Information about chronic beryllium disease (CBD).
www.beryllium.org
- Brachial Plexus Palsy Foundation
Nonprofit organization dedicated to raising awareness of brachial plexus palsy, a birth injuring that affects children, and providing resources for affected families.
membrane.com/bpp
- Canadian Bacterial Diseases Network
www.cbdn.ca
- Canadian Organization for Rare Disorders
Committed to the enhancement of the lives of all persons affected by rare disorders.
www.cord.ca
- 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.
www.staycalm.org
- Cleft Lip and Palate Association (CLAPA)
Provides information and support to new parents and people with the condition and their families.
www.clapa.com
- Cody Unser First Step Foundation
Not-for-profit corporation aimed at raising research funds to fight paralysis and build awareness of Transverse Myelitis.
www.codysfirststep.org
- Coeliac Society
U.K. society offers information and advice on coeliac disease.
www.coeliac.co.uk
- 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.
www.dailystrength.org
- Disfigurement Guidance
Information on treatments, literature, compensation and other services and facilities concerning disfigurement guidance and skin camouflage.
www.timewarp.demon.co.uk
- Dystonia Medical Research Foundation
Works to increase an understanding of dystonia through research, awareness, and support.
www.dystonia-foundation.org
- 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.
www.caregiver.org
- Foundation for Sarcoidosis Research
Nonprofit organization 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.
www.stopsarcoidosis.org
- 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.
www.48friend.org
- 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.
www.theglobalfund.org
- Histiocytosis Association of America Virtual Offices
Online support for patients with histiocytosis their family and friends.
www.histio.org
- Hormone Foundation, The
Promotes the prevention, diagnosis, and treatment of hormone-related conditions and diseases.
www.hormone.org
- Hughes Syndrome Foundation
Offers details of antiphospholipid syndrome and its treatment, research, and the foundation.
www.hughes-syndrome.org
- International Adhesions Society
www.adhesions.org
- International Foundation for Functional Gastrointestinal Disorders
Provides information on IBS, GERD, abdominal or pelvic pain, bowel incontinence, and other GI disorders.
www.iffgd.org
- International Pelvic Pain Society
www.pelvicpain.org
- International Society for the Study of Cough
Promotes research in cough and encourages the exchange of ideas and information.
www.issc.info
- Irritable Bowel Syndrome (IBS) Self Help Group
Including a bulletin board, library, and web ring.
www.ibsgroup.org
- Klippel-Trenaunay Support Group
Provides information about the group and about syndrome, and to provide families, adults with K-T, and professionals with links.
www.k-t.org
- Langer-Giedion Syndrome Association
International support organization for people and families living with Langer-Giedion Syndrome and related disorders.
lgsa.net
- Lois Joy Galler Foundation
Acquires the funds needed to conduct research and develop methods of preventing or curing Hemolytic Uremic Syndrome (HUS).
www.loisjoygaller.org
- 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.
directory.healthhaven.com/.../Organizations/Lupus_Foundation_of_America
- 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.
www.magicfoundation.org
- Med Help International
Providing medical information and advice via an online patient network and question and answer forums staffed by doctors.
www.medhelp.org
- 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.
www.medsupport.org
- 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.
www.melungeonhealth.org
- Mia Hamm Foundation
Raises funds and awareness for bone marrow transplant patients and continues the growth in opportunities for young women in sports.
www.miafoundation.org
- Myoclonus Research Foundation
www.myoclonus.com
- 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.
www.aphasia.org
- 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.
www.nads.org
- National Association for Incontinence
www.nafc.org
- National Enuresis Society
Features clips, news, and information for parents, kids, teens, and medical professionals.
www.kidney.org/patients/bw
- 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.
www.nemsn.org
- National Gaucher Foundation
www.gaucherdisease.org
- National Keratoconus Foundation
General information keratoconus, an ailment of the eye.
www.nkcf.org
- National Organization for Rare Disorders (NORD)
Voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare "orphan diseases."
www.rarediseases.org
- National Pancreas Foundation, The
Committed to advancing education and research related to diseases of the pancreas, including pancreatitis and pancreatic cancer.
www.pancreasfoundation.org
- National Pediculosis Association
National clearing house on head lice and scabies issues.
www.headlice.org
- National Reye's Syndrome Foundation, Inc.
Organization 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.
www.reyessyndrome.org
- 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.
www.nsrc-global.net
- 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 organization information, research initiative, clinical trials, message board, and various chapters.
directory.healthhaven.com/.../Tay_Sachs/National_Tay_Sachs___Allied_Diseases_Association
- 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).
www.nevusnetwork.org
- 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.
www.nothingbutnets.net
- 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.
rarediseases.info.nih.gov
- Ollier's Disease Self-Help Group
uhsweb.edu/olliers/olliers.htm
- Parent to Parent of Georgia, Inc.
Provides support and information to parents who have a child with a disability or special health care need.
www.parenttoparentofga.org
- Patient Organization for Primary Immune Deficiencies (IPOPI)
Chat, conferencing, member organizations around the world, great resources on the various immune deficiency diseases.
www.ipopi.org
- PBC Foundation, The
Charity supporting sufferers of the Liver Disease Primary Biliary Cirrhosis.
www.nhtech.demon.co.uk/pbc/index.html
- Pituitary Society, The
Seeks to further the understanding of diseases of the pituitary gland.
pituitarysociety.med.nyu.edu
- Purine Metabolic Patients' Association (PUMPA)
Charity supporting families with members suffering from purine metabolic diseases.
www.pumpa.co.uk
- Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
Interdisciplinary association for the advancement of rehabilitation and assistive technologies.
www.resna.org
- 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.
www.sltbr.org
- 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
www.well.com/user/sssa
- Stevens Johnson Syndrome Foundation
Provides information and support to the medical communities and the public.
www.stevensjohnsonsyndrome.net
- Stiff Man Syndrome Foundation
Nonprofit foundation organized because of the terrifying experiences of Chris Geilman who suffers from the rare disorder.
www.stiff-man.org
- Take the Lead
Take the Lead is a nonprofit organization "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."
www.takethelead.org
- Transverse Myelitis Association
Not-for-profit organization providing support to families affected by TM.
www.myelitis.org
- Wobblers Anonymouse
Support group for those damaged by gentamicin. Symptoms include oscillopsia and loss of balance.
www.wobblers.com
- Worldwide Society of Wolfram Syndrome Families
Support group for a rare disease.
www.wolframsyndrome.org
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