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.chem.ucsd.edu/asf
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.sonnet.com/avenues
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
http://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
Stanton, CA
888-970-0777
www.fiveminus.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
1470 Peel St. Ste. 745
Montreal, PQ CAN H3A 1T1
514-845-7855
http://generation.net/~epilepsy
Email: www.efa.org
Email: postmaster@efa.org
FRAGILE X SYNDROME (See also Attention Deficit Disorder; Autism; Learning Disabilaties)
FraXa Research Foundation
PO Box 935
West Newbury, MA 01985-0935
978-462-1990
www.qorx.net/fraxa
Email: info@fraxa.org
National Fragile X Foundation
Denver, CO
800-688-8765
www.infxf.org
Email: natfragx@ix.netcom.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
Alexandria, VA
www.digitalnation.com/avi
Email: avi@csgi.com
Deafness Research Foundation
New York, NY
www.drf.org
Email: drf@DRF.org
HYDRANENCEPHALY
Hydranencephaly Support Group
11467 - 272nd St.
Maple Ridge, B.C.
Phone: 604-462-8691
http://onward.to/hydranencephaly
Email: Barb Aleman -aleman@sprint.ca
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
www.roeher.ca
Email: info@roeher.ca
Email: info@cacl.ca
People First International
Salem, OR
www.open.org/people1/people1/:htm
Email: hearthd@open.org
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 Network
362 Jean Talon
St. Vanier, ON CAN K1L 6T9
613-742-5936
www.microcephaly.org
Email: amanda@inetdirect.com
MITOCHONDRIAL DISORDERS
COX Foundation for All Mitrochondrial Diseases
Monroeville, PA
http://biochemgen.ucsd.edu/umdf/
MYASTHENIA GRAVIS
Myasthenia Gravis Foundation Of America
222 S. Riverside Plaza, Ste. 1540
Chicago, IL 60606
800-541-5454
312-258-0461 (fax)
www.med.unc.edu/mgfa/
Email: myastheniagravis@msn.com
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
Ontario Prader-Willi Syndrome Association
1920 Yonge St. c104
Toronto, ON CAN M4X 3B2
800-563-1123
www3.sympatico.ca/prader-willi/
Email: prader-willi@sympatico.ca
Prader-Willi Foundation
Port Washington, NY
http://willi.inter.net
http://prader_willi.inter.net
Email: foundation@prader.net
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.tucson.com/rts
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
Libertyville, IL
800-886-1762
www.abacus96.com/fsma/
Email: sma@interaccess.com
STURGE-KALISCHER-WEBER SYNDROME & STURGE-WEBER SYNDROME
Sturge-Weber Foundation
PO Box 418
Mount Freedom, NJ 07970
800-627-5482
www.inforamp.net/~crs0590/mission.html
Email: swf@pobox.com
Sturge-Weber Foundation (Canada) Inc.
1960 Prairie Ave.
Port Coquitlam, BC CAN V3B 1V4
604-942-9202
604-942-6429 (fax)
www.inforamp.net/~cvs0590
Email: kmoore@axionet.com
SYRINGOMYELIA (See also Arnold-Chiari Malformation)
ASAP: American Syringomyelia Alliance Project
PO Box 1586
300 Green St. Ste. 206
Longview, TX 75606-1586
800-272-7282
www.dataprompt.com/syringo
Email: 102563.3507@compuserve.com
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
PO Box 2115
Vancouver, BC CAN V6B 3T5
604-852-2662
604-855-0032 (fax)
www.bmts.com/~williams/
Email: sev@uniserve.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
ASSISTIVE TECHNOLOGY
Arkenstone Inc.
Moffett Field, CA
www.arkenstone.org
Email: info@arkenstone.org
Macomb Project
Jacomb, IL
www.mprojects.wiu.edu
Email: l_robinsonl@wwiu.edu
New Hampshire Assistive Technology Center
Laconia, NH
Email: nhatech@cyberportal.net
CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)
www.mprojects.wiu.edu
COUNCIL FOR EXCEPTION CHILDREN
Reston, VA
www.cec.sped.org
EASTER SEALS
www.easterseals.org
INCLUSION RESOURCE NETWORK
British Columbia Teachers' Federation
www.bctf.bc.ca/IRN
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
www.rarediseases.org
MUMS: National Parent to Parent Network
c/o Julie Gordon
150 Cousta Ct
Green Bay WI 54301-1243
920-336-5333
www.waisman.wisc.edu/~rowley/mums/home.html
Email: mums@netnet.net
INTERNATIONAL RESPITE RESOURCE
http://onward.to/respite
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
www.chmc.org/departmt/sibsupp
Email: dmeyer@chmc.org