Angelman Syndrome
Angelman Syndrome Foundation, www.angelman.org/angel
Angels Among Us, home.earthlink.net/~julhyman/angel.htm
Autism
Association for Autism and Allied Disorders (Canada), 03-5226-1420
Autism Research Institute, www.autism.com/ari
Autism Services Center, 304-525-8014, www.autismservicescenter.org
Autism Society of America, www.autism-society.org
Center for the Study of Autism, www.autism.org
Indiana Resource Center for Autism, 812-855-6508, www.iidc.indiana.edu/irca
Journal of Autism and Developmental Disorders, 800-221-9369
New Jersey Center for Outreach and Services for the Autism Community, 609-883-8100, www.njcosac.org
Cerebral Palsy
American Academy for Cerebral Palsy and Developmental Medicine, 804-282-0036, www.aacpdm.org
Brain Injury Association, Inc., 703-236-6000, www.biausa.org
Brain Injury Association of California, 800-457-2443, www.biaca.org
National Rehabilitation Information Center, 800-346-2742, www.naric.com
UC Davis M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders), 888-883-0961, www.ucdmc.ucdavis.edu/mindinstitute
United Cerebral Palsy Associations, Inc., 800-872-5827, www.ucpa.org
Down Syndrome
National Association for Down Syndrome, www.nads.org
National Down Syndrome Congress, 800-232-6372, www.ndsccenter.org
National Down Syndrome Education and Research Institute, web.idirect.com/~ndseri
National Down Syndrome Society, 800-221-4602, www.ndss.org
Epilepsy
American Epilepsy Society, www.aesnet.org
Bowman Gray School of Medicine Epilepsy Information Service, 800-642-0500
Epilepsy Foundation of America, 800-332-1000, www.efa.org
Epilepsy International, www.epiworld.com
National Institute of Neurologic Disorders and Stroke, www.ninds.nih.gov
The Epilepsy Link Page, www.neuro.wustl.edu/epilepsy/#links
Fetal Alcohol Syndrome
CDC Fetal Alcohol Syndrome Branch, www.cdc.gov/ncbddd/fas/default.htm
The Clearinghouse for Drug Exposed Children (UC San Francisco), 415-476-9691
FAS/FAE Newsletter, 907-456-2866
The Fetal Alcohol Network Newsletter, 610-384-1133
The Fetal Alcohol Syndrome Family Resource Institute, 253-531-2878, www.fetalalcoholsyndrome.org
National Clearinghouse for the Prevention of Perinatal Abuse of Alcohol and Other Drugs, 800-354-8824
National Organization on Fetal Alcohol Syndrome, 202-785-4585, www.nofas.org
Fragile X Syndrome
FRAXA Research Foundation, 978-462-1866, www.FRAXA.org
National Fragile X Foundation, 800-688-8765, www.nfxf.org
Klinefelter (XXY) Syndrome
American Association for Klinefelter Syndrome Information and Support, www.aaksis.org
Klinefelter Syndrome and Associates, 916-773-2999, www.genetic.org/ks
Klinefelter Syndrome Association, 414-987-5782
Klinefelter Syndrome Support Group, 913-537-9398, klinefeltersyndrome.org
National Institutes of Health, health.nih.gov/result.asp?disease_id=387
XXY Network, 209-532-3006, klinefeltersyndrome.org/XXYnetwork.htm
Muscular Dystrophy
Duchenne Muscular Dystrophy Research Center, University of Pittsburgh, 412-648-9024
Duchenne Parent Project, 212-262-6433, www.parentproject.org
European Alliance of Neuromuscular Disorders Associations, www.eamda.net
Muscular Dystrophy Association (USA), 800-572-1717, www.mdausa.org
Muscular Dystrophy Association of Canada, www.mdac.ca
Muscular Dystrophy Association of South Australia Inc., 1-800-685-266, www.mdasa.org.au
Neurofibromatosis
American Academy of Dermatology, 888-462-DERM, www.aad.org
The National Neurofibromatosis Foundation, Inc., 800-323-7938, www.ctf.org
The Neurofibromatosis Clinic (Massachusetts General Hospital), 617-942-6825, neurosurgery.mgh.harvard.edu/NFclinic
Neurofibromatosis, Inc., 800-942-6825, www.nfinc.org
Neurofibromatosis Resources, neurosurgery.mgh.harvard.edu/NFR/
Prader-Willi Syndrome
Prader-Willi California Foundation, 800-400-9994, www.pwcf.org
The Prader-Willi Connection, 800-358-0682
The Prader-Willi Foundation, Inc., 516-621-2445
Prader-Willi Syndrome Association (USA), 800-926-4797, www.pwsausa.org
Rett Syndrome
Baylor College of Medicine Rett Center, 713-798-RETT, bluebirdrett.bcm.tmc.edu
target=”_blank”>http://health.groups.yahoo.com/group/ClubRett/
International Rett Syndrome Association, Inc., 800-818-RETT, www.rettsyndrome.org
Kennedy-Krieger Institute Rett Program, 800-873-3377
Northwest Rett Syndrome Foundation, 503-694-5192, www.nwrettsyndrome.org
Rett Syndrome Research Foundation, 800-422-RETT, www.rsrf.org
Spina Bifida/Hydrocephalus
Children with Spina Bifida: A Resource Page for Parents, www.waisman.wisc.edu/~rowley/sb-kids
Guardians of Hydrocephalus Research Foundation, 800-458-8655, ghrf.homestead.com/ghrf.html
Hydrocephalus Association, 415-776-4713, www.hydroassoc.org
International Federation for Hydrocephalus and Spina Bifida, www.ifglobal.org
National Hydrocephalus Foundation, 815-467-6548, www.nhfonline.org
Spina Bifida Association of America, 800-621-3141, sbaa.org
Trisomy 18 (Edwards Syndrome)
The Chromosome 18 Registry and Research Society, 210-657-4968, www.chromosome18.org
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT), 800-716-SOFT, www.trisomy.org
Tuberous Sclerosis
American Academy of Dermatology, 888-462-DERM, www.aad.org
National Tuberous Sclerosis Association, Inc., 800-225-NTSA, www.ntsa.org
Williams Syndrome
The Lili Claire Foundation, www.liliclairefoundation.org
Williams Syndrome Association, 248-541-3630, www.williams-syndrome.org
Williams Syndrome Foundation, 714-824-7259, www.wsf.org