AGENESIS OF THE CORPUS CALLOSUM (AICARDI SYNDROME)
Aicardi Syndrome Awareness and Support Group
29 Delavan Ave.
Toronto, ON CAN M5P 1T2
416-481-4095
Aicardi Syndrome Newsletter
www.Aicardi.com
Email: AICNews@aol.com
ANGELMAN SYNDROME
Angelman Syndrome Foundation
414 Plaza Dr., Ste. 209
Westmont, IL 60559-5507
www.angelman.org
Canadian Angelman Syndrome Society
PO Box 37
Priddis, AB CAN T0L 1W0
403-931-2415 (Voice/fax)
Email: caff@cadvision.com
ARTHROGRYPOSIS MULTIPLEX CONGENITA (See Also Growth Disorders, Muscular Dystrophy)
AVENUES: A National Support Group for Arthrogryposis Multiplex Congenita
PO Box 5192
Sonora, CA 95370
209-928-3688
www.avenuesforamc.com
Email: avenues@sonnet.com
CAST: Canadian Arthrogryposis Support Team
365 Fiddler's Green Rd. S.
Ancaster, ON CAN L9G 1X2
905-648-2007
Email: cast@freenet.hamilton.on.ca
ATAXIA
National ataxia Foundation
2600 Fernbrook Ln. Ste. 119
Plymouth MN 55447-4752
612-553-0020
612-553-0167
www.ataxia.org
Email: naf@mr.net
BRAIN INJURY (See also Aphasia, Acquired)
Brain Injury Association
105 N. Alfred St.
Alexandria, VA 22314
800-444-6443 (family helpline)
703-236-6000 (Phone)
703-236-6001 (Fax)
www.biausa.org
CARNITINE DEFICIENCY SYNDROMES (See also Acidemia, Organic; Fatty Oxidation Disorder; Muscular Dystrophy)
Assistance for Babies and Children with Carnitine Deficiency - ABCD Inc.
1010 Jorie Blvd. Ste. 234
Oak Brook, IL 60521
800-554-2223 (phone)
630-472-1744 (fax)
CEREBRAL PALSY
Ontario Federation for Cerebral Palsy
1630 Lawrence Ave. W. Ste. 104
Toronto, ON CAN M6L 1C5
416-244-8003 (phone)
416-244-6543 (fax)
Email: ofcp@ofcp.on.ca
United Cerebral Palsy Association
Washington, DC
www.ucpa.org
Email: ucpainc@aol.com
Cerebral Palsy Association of British Columbia
www.bccerebralpalsy.com/
102-317 Columbia Street
New Westminster, BC V3L 1A7
Office Hours:
Monday to Thursday 9:00 am to 5:00 pm PST
Phone: 604-515-9455
Toll Free: 1-800-663-0004
Fax: 604-515-9466
For information: info@bccerebralpalsy.com
To volunteer: volunteer@bccerebralpalsy.com
CRIGLER-NAJJAR (Liver Disease and Transplant)
American Liver Foundation
1425 Pompton Ave.
Cedar Grove, NJ 07009
800-223-0179
www.liverfoundation.org
Email: webmail@liverfoundation.org
Canadian Liver Foundation
365 Bloor St. E. Ste. 200
Toronto, ON CAN M4W 3L4
800-563-5483 (Canada Only)
www.liver.ca/
Email: clf@liver.ca
CRI DU CHAT SYNDROME
5p-Society
PO Box 268
Lakewood, CA 90714-02 68
888-970-0777
www.fivepminus.org
Email: fivepminus@aol.com
CYCLIC VOMITING SYNDROME
Cyclic Vomiting Syndrome Association
13180 Caroline Ct.
Elm Grove WI 53122
414-784-6842 (phone)
414-821-5494 (fax)
http://ezinfo.ucs.indiana.edu/~jdbickel/cus.html
Email: kadams@mcw.edu
DEAFBLIND (See also Hearing Impairments; Visual Impairments)
American Association of the Deaf-Blind
814 Thayer Ave. Ste. 302
Silver Spring, MD 20910
301-588-6545 (TTY only)
The Canadian Deafblind and Rubella Association
c/o The W Ross Macdonald School
350 Brant Ave.
Brantford, ON CAN N3T 3J9
519-754-0729
National Family Association for Deaf-Blind
111 Middle Neck Rd.
Sands Point, NY 11050
800--255-0411, ext. 275
516-944-8637 (TTY)
www.helenkeller.org
Email: hkncdir@aol.com
EPILEPSY (See also Seizure Disorders)
American Epilepsy Society
www.aesnet.org
Email: info@aesnet.org
Epilepsy Canada
2255B Queen St., Suite 336
Toronto, ON M4E 1G3
1-877-734-0873 www.epilepsy.ca
Email: epilepsy@epilsepsy.ca
FRAGILE X SYNDROME (See also Attention Deficit Disorder; Autism; Learning Disabilaties)
FraXa Research Foundation
45 Pleasant St.
Newbury Port, MA 01950
978-462-1886
www.fraxa.org/default.aspx
Email: info@fraxa.org
Fragile X Research Foundation of Canada
167 Queen St. W.
Brampton, ON L6Y 1M5
905-453-9366
www.fragilex-x.ca
Email: fxrfc@on.aibn.com
HEARING IMPAIRMENTS
Alexander Graham Bell Association for the Deaf
Washington, DV
www.agbell.org
Email: agbell2@aol.com
The Canadian Hearing Society
Toronto, ON
www.chs.ca
Email: info@chs.ca
Auditory-Verbal International
703-739-1049
www.auditory-verbal.org
Deafness Research Foundation
New York, NY
www.drf.org
Email: drf@DRF.org
HYDRANENCEPHALY
National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
PO Box 5801
Bethesda, MD 20824
800-352-9424
http://www.rinds.nih.gov/disorders/hydraencephaly/hydraencephaly.com
HYDROCEPHALUS
Guardians of Hydrocephalus Research Foundation
2618 Ave. Z
Brooklyn, NY 11235
800-458-8655
Hydrocephalus Association
San Francisco, CA
http://neurosurgery.mgh.harvard.edu/ha/
Email: hydroassoc@aol.com
LATEX ALLERGY
Latex Allergy Information Service
176 Roosevelt Ave.
Torrington, CT 06790
860-482-6869
860-482-2294
www.latexallergyhelp.com
Email: 76500.1452@compuserve.com
MENTAL RETARDATION
Canadian Assocation for Community Living and The Roeher Institute
4700 Keele St.
Kinsman Bldg. York University
North York, ON CAN M3J 1P3
416-661-9611
www.cacl.ca
Email: info@roeher.ca
Email: info@cacl.ca
METABOLIC DISORDERS (See also Acidemia, Organic; Galactosemia; Lactic Acidosis; Maple Syrup Urine Disease; Niemann-Pick Disease; Phenylketonuria-PKU)
Association for Neurometabolic Disorders
5223 Brookfield Ln.
Sylvania, OH 43560-1809
419-885-1497
Canadian Society for Metabolic Disease
3738 Sunset St.
Burnaby, BC CAN V5G 1T2
604-435-0085 (voice/fax)
Metabolic Information Network
Dallas TX
800-945-2188 (US/Cdn)
Email: mizesg@ix.netcom.com
MICROCEPHALY
Microcephaly Support Group
Linda Garry
PO Box 519
Pinner, UK HA5 9DR
0163-855-2689
www.microcephaly.co.uk
Email: admin@microcephaly.co.uk
MITOCHONDRIAL DISORDERS
The United Mitochondrial Disease Foundation
8085 Saltsburg Rd., Suite 201
Pittsburgh, PA 15239
http://www.umdf.org
Email: info@umdf.org
MYASTHENIA GRAVIS
Myasthenia Gravis Foundation Of America
355 Lexington Ave., 15th Floor
NY, NY 10017
800-541-5454
212-370-9047 (fax)
www.myasthenia.org
MYOTONIA, CONGENITA (See Muscular Dystrophy)
OSTEOGENESIS IMPERFECTA (See also Growth Disorders)
Canadian Osteogenesis Imperfecta Society
128 Thornhil Crescent
Chatham, ON CAN N7L 4M3
519-436-0025
519-351-4043 (fax)
Email: mkearney@kent.net
PACHYGYRIA (See Lissencephaly or Epilepsy)
Lissencephaly Network
716 Autumn Ridge Ln.
Fort Wayne, IN 46804
219-432-4310 (voice/fax)
www.lissencephaly.org
Email: lta1@is2.nyu.edu
PRADER-WILLI SYNDROME
BC Prader-Willi Syndrome Association
2129 Lillooet Cr.
Kelowna, BC V1V 1W3
800-563-1123
www.bcpwsa.com
Prader-Willi Foundation
209 Pennsylvania Ave., SE Suite 2290
Washington, DC 20003
www.fpwr.org
The Prader-Willi Syndrome Association (USA)
Sarasota, FL
800-926-4797
http://www.pwsausa.org/
Email: pwsausa@aol.com
RETINOPATHY OF PREMATURITY (See also Neonatal Illness/Prematurity; Visual Impairments)
Prevent Blindness in Premature Babies
PO Box 44792
Madison, WI 53744-4792
RETT SYNDROME
International Rett Syndrome Association
9121 Pscataway Rd. Ste. 2B
Clinton, MD 20735
800-818-7388
www.rettsyndrome.org/
Email: irsa@rettsyndrome.org
Ontario Rett Syndrome Association
147 Westdale Rd.
Oakville, ON CAN L6L 4Z7
905-844-7673
RUBINSTEIN-TAYBI SYNDROME (See also Craniofacial Disorders; Heart Disorders)
Rubinstein-Taybi Parent Group
c/o Lorrie Baxter
P.O. Box 146
Smith Center, KS 66967
785-697-2984
785-697-2985 (fax)
www.rubinstein-taybi.org
Email: lbaxter@ruraltel.net
SCOLIOSIS
National Scoliosis Foundation
5 Cabot Place
Stoughton, MA 02072
781-341-6333
www.scoliosis.org
Email: scoliosis@aol.com
SEIZURE DISORDERS (See also Aicardi Syndrome; Epilepsy)
Threshold-Intractable Seizure Disorder Support Group & Newsletter
2150 Highway 35, Ste. 207C
Sea Girt, NJ 08750
www.efnj.com
Email: fsnj@aol.com
SPINAL MUSCULAR ATROPHY (See also Muscular Dystrophy; Ventilator Use)
Families of SMA
Box 196, Libertyville, IL 60048-0196
800-886-1762
www.fsma.org
Email: info@fsma.org
STURGE-KALISCHER-WEBER SYNDROME & STURGE-WEBER SYNDROME
Sturge-Weber Foundation
PO Box 418
Mount Freedom, NJ 07970-0418
800-627-5482 Fax 973-895-4846
http://www.sturge-weber.com/home.asp
Email: swf@sturge-weber.org
Sturge-Weber Foundation (Canada) Inc.
1960 Prairie Ave.
Port Coquitlam, BC CAN V3B 1V4
604-942-9202
http://www.sturge-weber.ca
Email: sturge-weber@shaw.ca
SYRINGOMYELIA (See also Arnold-Chiari Malformation)
ASAP: American Syringomyelia & Chiari Alliance Project
PO Box 1586
Longview, TX 75606-1586
800-272-7282
http://www.asap.org/
Email: info@asap.org
TREMOR
International Tremor Foundation
7046 W. 105th St.
Overland Park, KS 60607
913-341-3880
913-341-1296 (fax)
Email: inttremorfnd@worldnet.att.net
USHER SYNDROME
Usher Around The World
c/o Kathie Anderson
PO Box 17318
Minneapolis, MN 55417
612-729-4630 (Voice/TTY)
VESTIBULAR DISORDERS (See also Balance Disorders & Dizziness)
Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
800-837-8428
503-229-8604 (fax)
www.vestibular.org
Email: veda@teleport.org
WILLIAMS SYNDROME
Canadian Association for Williams Syndrome
Provincial Contact - Cindy Sanford, Box 26206
Richmond, BC V6Y 3V3
http://caws.sasktelwebhosting.com/
Email: cawbc@yahoo.com
Williams Syndrome Association
PO Box 297
Clawson, MI 48017-0297
241-541-3630
241-541-3631 (fax)
http://members.aol.com/BobHazard/wsc.html
Email: WSAoffice@aol.com
ADDITIONAL RESOURCES
ACCESSIBLE PLAYGROUNDS
Boundless Playgrounds Hasbro National Resource Center
West hartford, CT
877-268-6365 (toll free)
www.boundlessplaygrounds.org
ARCHITECTURAL ACCESSIBILITY
Center for Universal Design North Carolina State University School of Design
Raleigh, NC
800-647-6777 (Voice/TTY, US & Canada)
www.boundlessplaygrounds.org
Email: cahd@ncsu.edu
CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)
http://www.raredisorders.ca/
COUNCIL FOR EXCEPTION CHILDREN
Reston, VA
www.cec.sped.org
EASTER SEALS
www.easterseals.org
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
www.rarediseases.org
MUMS: National Parent to Parent Network
c/o Julie Gordon
150 Custer Ct
Green Bay WI 54301-1243
920-336-5333
http://www.netnet.net/mums/
Email: mums@netnet.net
SIBLING SUPPORT
Sibling Information Network
Storrs, CR
860-486-4985
860-486-5037 (fax)
Email: speadm01@uconnvm.uconn.edu
Sibling Support Project
Children's Hospital and Regional Medical Center
Seattle, WA
http://www.siblingsupport.org/
Email: donmeyer@siblingssupport.org