Disease Support and Information

American Tinnitus Association
National nonprofit organization dedicated to advancing tinnitus research and educating patients
PO Box 5
Portland, OR. 97207-0005
(800) 634-8978
www.ata.org

Brachial Plexus Palsy Foundation
Non-profit organization dedicated to raising awareness of brachial plexus palsy, a birth injuring that affects children, and providing resources for affected families
210 Spring Haven Circle
Royersford, PA. 19468
E-mail: brachial@aol.com 
http://membrane.com/bpp

CDG Family Network Foundation 
Non-profit organization made up of parents and physicians seeking information and support for a Carbohydrate-deficient Glycoprotein Syndrome which is also now referred to as Congenital Disorders of Glycosylation  
27047 Spring Valley Rd.
Shannon, IL. 61078
(815) 864-2554  
www.cdgs.com

Dermatlas
An international collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images on the World Wide Web. The Dermatlas is compiled, reviewed, scored and updated by physicians of the Johns Hopkins University. Currently 3102 clinical and histological images, 14 CME cases and 754 diagnoses are included in this fast growing collection of dermatology images.
Departments of Dermatology and Pediatrics
Johns Hopkins University School of Medicine
600 N. Wolfe Street, Brady 208
Baltimore, MD 21287-3200
www.dermatlas.org

Ehlers-Danlos National Foundation (EDNF)
Providing emotional support and updated information to those affected by Ehlers-Danlos syndrome and to their family members. In addition, EDNF serves as a vital information link to and from the medical community.
6399 Wilshire Blvd., Ste 203
Los Angeles, CA 90048
(323) 651-3038
www.ednf.org

Family Caregiver Alliance
An information Resource for long term care
690 Market Street, Suite 600
San Francisco, CA. 94104
(415) 434-3388
www.caregiver.org

Family Voices National Office 
A network of families from throughout the United States who have children with special health needs; as well as caregivers, professionals, and friends whose lives have been touched by these children and their families
3411 Candelaria NE, Suite M
Albuquerque, NM. 87107
1-888-835-5669
E-mail: kidshealth@familyvoices.org
www.familyvoices.org

Fatigue, Insomnia, and Chronic Fatigue Syndrome Relief
A personal web site of "Tips for Coping With Fibromyalgia & Insomnia"
www.fms-help.com/contents.htm

Fightsma.com, the website for Andrew's Buddies
National organization committed to accelerating a cure for spinal muscular atrophy (SMA)
Andrew's Buddies Corp.
P.O. Box 785
Richmond, VA. 23218-0785
www.fightsma.com

Friends' Health Connection (FHC)
Nonprofit support network that connects people with similar health problems for the purpose of mutual support
PO Box 114
New Brunswick, NJ 08903
1-800/48-FRIEND (483-7436)
www.48friend.com

Genesis Fund
Provides funding for diagnosis and treatment of children born with birth defects, mental retardation and genetic disorders
(781) 575-1177
www.thegenesisfund.org

Haemochromatosis Society
Providing support to people diagnosed with Genetic Haemochromatosis 
Haemochromatosis Society, Hollybush House, Hadley Green Rd., Barnete, Herts, EN5 5PR, England  
www.ghsoc.org

Hemi Kids Organization
Support for kids who have hemiplegia due to pediatric stroke or other causes   
Children's Hemiplegia and Stroke Association
Suite 305, PMB 149
4101 W. Green Oaks 
Arlington, TX. 76016
E-mail: info@chasa.org
www.hemikids.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY. 10605
888-MODIMES (663-4637)
www.modimes.org

The Medical Education Institute, Inc.
"Helping people with chronic diseases learn to manage and improve their health."
414 D'Onofrio Drive, Suite 200
Madison, WI 53719
Phone: (608)833-8033
Fax:  (608)833-8366
www.MedicalEducationInstitute.org

Myelin Project
Organization working to accelerate research on repairing the myelin of the central nervous system
2136 Gallows Rd., Suite E
Dunn Loring, VA. 22027
800-869-3546
E-mail: mp@myelin.org
www.myelin.org

Myeloma Organization
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
800-452-2873
www.myeloma.org

National Adrenal Diseases Foundation
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 
505 Northern Boulevard
Great Neck, NY. 11021
(516) 487-4992
e-mail: nadfmail@aol.com
www.medhelp.org/nadf

National Institute on Aging
Building 31, Room 5C27
31 Center Drive, MSC 2292
Bethesda, MD. 20892
(301) 496-1752
www.nia.nih.gov

National Necrotizing Fasciitis Foundation (NNFF)
Non-profit organization for education, resources and support in regard to necrotizing fasciitis (the flesh eating bacteria)
(616) 261-2538 or (860) 739-3474
www.nnff.org

National Neurofibromatoses Foundation
95 Pine St., 16th Fl.
New York, NY. 10005
800-323-7938
www.nf.org

National Organization for Albinism, Hypopigmentation
Nonprofit, tax-exempt organization that offers information and support to people with albinism, their families and the professionals who work with them
PO Box 959
E. Hamstead, NH. 03826-0959
800-473-2310
www.albinism.org     

National Organization for Rare Disorders (NORD)
Volunteer Health Organization providing information on prevention, treatment and cure of rare "orphan diseases"
PO Box 8923
New Fairfield, CT. 06812-8923
(203) 746-6518
E-mail: orphan@rarediseases.org
www.rarediseases.org

National Rosacea Society
800 S. NW. Highway, Suite 200
Barrington, IL. 60010
1-888-NO-BLUSH
E-mail: rosaceas@aol.com

Neuropathy Association
Non profit organization established by people with neuropathy, their families and friends, to provide support and education, and to fund research to find a cure
800-247-6968
E-mail: info@neuropathy.org
www.neuropathy.org

Parkinson Disease 
Contact information for organizations providing support and education for consumers with Parkinson Disease
www.neurosurgery.mgh.harvard.edu/ep-resrc.htm

Pharma-Lexicon
Look up medical and pharmaceutical acronyms and abbreviations
www.pharma-lexicon.com

Sleep Net
Educational, non-commercial site devoted to improving sleep health worldwide
www.sleepnet.com/support.htm

Society for Mitral Valve Prolapse Syndrome
Non-profit, charitable organization dedicated to spreading the word about MVP Syndrome
www.mitralvalveproblems.com

Spina Bifida Association of America
Promoting the prevention of spina bifida and enhancing the lives of those affected by the Spina Bifida
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
800-621-3141
www.sbaa.org

Student Alliance on ADD and other Learning Disabilities
E-mail: webmaster@adult-add.org 
www.adult-add.org/medical/index.html

Tomorrows Children's Fund
Privately funded organization that strives to ease the pain and suffering of children with serious blood disorders
www.atcfkid.com

Vascular Birthmarks Foundation
Charitable organization providing support and information resources to consumers affected by hemangiomas, port wine stains, and other vascular birthmarks and tumors
PO Box 106
Latham, NY. 12110
(877) VBF-LOOK
www.birthmark.org