National
Disabilities Organizations & Information Groups
To
be an effective advocate, you need to learn about your child's disability
and how the disability affects your child's ability to learn. These
organizations and groups provide information and answer questions.
If
your know about a national disabilities organization or information
group that is not on this list, please send a description of the
organization and contact information by email to
Addresses,
phone numbers, and email addresses change often. If you learn that
an organization has new contact information, please Send
your changes and suggestions to
with the correct information.
Alexander
Graham Bell Association for the Deaf and Hard of Hearing
202-337-5220 (Voice); 202-337-5221 (TTY)
Email: info@agbell.org
Website: www.agbell.org
Alliance
for Technology Access
800-455-7970; 415-455-4575 (Voice); 415-455-0491 (TTY)
Email: atainfo@ataccess.org
Website: www.ataccess.org
American
Brain Tumor Association
847-827-9910; 800-886-2282 (Patient Services)
Email: info@abta.org
Website: www.abta.org/
American
Council of the Blind
800-424-8666; 202-467-5081
Email: ncrabb@erols.com
Website: www.acb.org
American
Council on Rural Special Education (ACRES)
785-532-2737
Email: acres@ksu.edu
Website: www.ksu.edu/acres
American
Diabetes Association
800-342-2383; 703-549-1500
Email: customerservice@diabetes.org
Website: www.diabetes.org
American
Foundation for the Blind (AFB)
800-232-5463; 212-502-7662 (TTY)
Publications available in Spanish
Email: afbinfo@afb.org
Website: www.afb.org
American
Occupational Therapy Association (AOTA)
301-652-2682 (Voice)
Website: www.aota.org
American
Physical Therapy Association (APTA)
800-999-2782; 703-684-2782 (Voice); 703-683-6748 (TTY)
Email: practice@apta.org
Website: www.apta.org
American
Society for Deaf Children
800-942-2732; 717-334-7922 (V/TTY)
Email: ASDC1@aol.com
Website: www.deafchildren.org
American
Speech-Language-Hearing Association (ASHA)
800-498-2071 (V/TTY); 301-571-0457 (TTY)
Publications available in Spanish; Spanish speaker on staff
Email: actioncenter@asha.org
Website: www.asha.org
American
Therapeutic Recreation Association
703-683-9420
Email: atra@atra-tr.org
Website: www.atra-tr.org
Angelman
Syndrome Foundation
800-432-6435; 630-734-9267
Email: asf@adminsys.com
Website: www.angelman.org
Anxiety
Disorders Association of America
301-231-9350
Email: AnxDis@adaa.org
Website: www.adaa.org
Aplastic
Anemia & MDS International Foundation
800-747-2820; 410-867-0242
Email: aamdsoffice@aol.com
Website: www.aamds.org
The
Arc (formerly the Association for Retarded Citizens of the U.S.)
301-565-3842
Email: Info@thearc.org
Website: www.thearc.org
Asperger Syndrome
Education Network (ASPEN®)
9 Aspen Circle
Edison, NJ 08820
(732) 321-0880
E-mail: info@aspennj.org
Website www.aspennj.org
Asthma
and Allergy Foundation of America
800-727-8462; 202-466-7643
Email: info@aafa.org
Website: www.aafa.org/
Attention Deficit
Disorders Associaitons - Southern Region
281-897-0982
Email: oflanigan@adda-sr.org
Website: http://www.adda-sr.org/
Autism
Society of America
800-328-8476; 301-657-0881
Publications available in Spanish
Website: www.autism-society.org
Brain
Injury Association (formerly the National Head Injury Foundation)
800-444-6443; 703-236-6000
Publications available in Spanish
Email: FamilyHelpline@biausa.org
Website: www.biausa.org
Center
for Mental Health Services, Knowledge Exchange Network
Publications available in Spanish
800-789-2647; 301-443-9006 (TTY)
Email: ken@mentalhealth.org
Website: www.mentalhealth.org
Child and Adolescent
Bipolar Foundation
Website: http://cabf.org/
Children
and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
800-233-4050 (To request information packet)
Email: national@chadd.org
Website: www.chadd.org
Children's
Craniofacial Association
800-535-3643; 972-994-9902
Email: contactcca@ccakids.com
Website: www.ccakids.com
Children's
Liver Alliance
718-987-6200
Email: Livers4Kids@earthlink.net
Website: http://livertx.org
Children
With Disabilities
Email: ChildrenDisabilities@ncjrs.org
Website: http://www.childrenwithdisabilities.ncjrs.org/
Chronic
Fatigue & Immune Dysfunction Syndrome Association
800-442-3437; 704-365-9755
Email: info@cfids.org
Website: www.cfids.org
Council
for Exceptional Children (CEC)
703-620-3660 (Voice); 703-264-9446 (TTY)
Email: cec@cec.sped.org
Website: www.cec.sped.org/
Craniofacial
Foundation of America
800-418-3223; 423-778-9192
Email: farmertm@erlanger.org
Website: www.erlanger.org/cranio
Disability and Business
Technical Assistance Centers (DBTACs)
800-949-4232
Website: http://www.adata.org/dbtac.html
DisAbility.gov
Email:
webmaster@disability.gov
Website: http://www.disability.gov/CSS/
Easter
Seals-National Office
800-221-6827; 312-726-6200 (Voice); 312-726-4258
(TTY)
E-Mail: info@easter-seals.org
Website: www.easter-seals.org
Epilepsy
Foundation-National Office
800-332-1000; 301-459-3700
Publications available in Spanish; Spanish speaker on staff
Email: postmaster@efa.org
Website: www.efa.org
FACES:
The National Craniofacial Association
800-332-2372; 423-266-1632
Email: faces@faces-cranio.org
Website: www.faces-cranio.org
Families
for Early Autism Treatment
P.O. Box 255722
Sacramento, CA 95865-5722
916-843-1536
Email:webmaster@feat.org
Website: www.feat.org
Family
Village (community of disability-related resources)
Website: www.familyvillage.wisc.edu/
Family
Voices (national coalition for children with special health
care needs)
888-835-5669; 505-867-2368
Email: kidshealth@familyvoices.org
Website:www.familyvoices.org
Families For Hands
and Voices
P.O. Box 371926
Denver, CO 80237
Phone: (303) 300-9763
Toll Free: (866) 422-0422
Email: parentadvocate@handsandvoices.org
Website: http://www.handsandvoices.org
Father's
Network
425-747-4004, ext. 218
Email: jmay@fathersnetwork.org
Website: www.fathersnetwork.org
Federation
of Families for Children's Mental Health
703-684-7710
Publications available in Spanish
Email: ffcmh@ffcmh.com
Website: www.ffcmh.org
Foundation
for Ichthyosis & Related Skin Types
800-545-3286; 610-789-3995
Email: ichthyosis@aol.com
Website: www.libertynet.org/~ichthyos/
The
Genetic Alliance (formerly the Alliance of Genetic Support Groups)
800-336-4363; 202-966-5557
Email: info@geneticalliance.org
Website: www.geneticalliance.org
Hydrocephalus
Association
415-732-7040
Email: hydroassoc@aol.com
Website: www.hydroassoc.org
Independent
Living Research Utilization Project
The Institute for Rehabilitation and Research
713-520-0232 (Voice)
Email: ilru@ilru.org
Website: www.ilru.org
Institute
on Independent Living
Email: admin@independentliving.org
Website: http://www.independentliving.org/
International
Dyslexia Association (formerly the Orton Dyslexia Society)
800-222-3123; 410-296-0232
Email: info@interdys.org
Website: www.interdys.org
International Fibrodysplaisa
Ossificans Progressiva Association (IFOPA)
P.O.Box 196217
Winter Springs, FL 32719-6217
Note: This organization is based in FL but has members around the
world.
407-365-4194
E-mail: Ifopa@vol.com
Website: www.ifopa.org
International
Resource Center for Down Syndrome
216-621-5858; 800-899-3039 (toll-free in OH only)
Email: hf854@cleveland.freenet.edu
International
Rett Syndrome Association
800-818-7388; 301-856-3334
Email: irsa@rettsyndrome.org
Website: www.rettsyndrome.org
Learning
Disabilities Association of America (LDA)
888-300-6710; 412-341-1515; 412-341-8077
Publications available in Spanish
Email: vldanatl@usaor.ne
Website: www.ldanatl.org
Leukemia
& Lymphoma Society (formerly Leukemia Society of America)
800-955-4LSA; 212-573-8484
Email: infocenter@leukemia-lymphoma.org
Website: www.leukemia-lymphoma.org
Little
People of America-National Headquarters
888-LPA-2001
Spanish speaker on staff
Email: LPADataBase@juno.com
Website: www.lpaonline.org
March
of Dimes Birth Defects Foundation
914-428-7100; 888-663-4637
Publications available in Spanish
Email: resourcecenter@modimes.org
Website: www.modimes.org
Muscular
Dystrophy Association (MDA)
800-572-1717; 520-529-2000
Publications available in Spanish
Email: mda@mdausa.org
Website: www.mdausa.org
National
Alliance for the Mentally Ill (NAMI)
800-950-6264; 703-524-7600; 703-516-7991 (TTY)
Publications available in Spanish
Email: namiofc@aol.com
Website: www.nami.org
National
Association of the Deaf
301-587-1788; 301-587-1789 (TTY)
Email: nadinfo@nad.org
Website: www.nad.org
National
Association of Private Schools for Exceptional Children (NAPSEC)
202-408-3338
Email: napsec@aol.com
Website: www.napsec.com
National
Ataxia Foundation
612-553-0020
Email: naf@mr.net
Website: www.ataxia.org
National
Attention Deficit Disorder Association
Email: mail@add.org
Website: www.add.org
National
Brain Tumor Foundation
800-934-2873; 510-839-9777
Email: nbtf@braintumor.org
Website: www.braintumor.org
National
Center for Learning Disabilities (NCLD)
212-545-7510; 888-575-7373
Website: www.ncld.org
National
Council on Independent Living
703-525-3406; 703-525-4153 (TTY)
Email: ncil@ncil.org
Website: www.ncil.org
National
Cued Speech Association (NCSA)
Information Services - Cued Speech Discovery
800-459-3529 (TTY)
Email: CuedSpDisc@aol.com
Website: http://www.cuedspeech.org
National
Down Syndrome Congress
800-232-6372; 770-604-9500
Spanish speaker on staff
Email: NDSCcenter@aol.com
Website: www.ndsccenter.org
National
Down Syndrome Society
800-221-4602; 212-460-9330
Email: info@ndss.org
Website: www.ndss.org
National
Family Association for Deaf-Blind (NFADB)
111 Middle Neck Rd.
Sands Point, NY 11050-1129
1-800-255-0411, ext. 275
Email: NFADB@aol.com
Website: WWW.NFADB.ORG
National
Federation for the Blind
410-659-9314
Email: nfb@iam.digex.net
Website: www.nfb.org
National
Fragile X Foundation
800-688-8765; 303-333-6155
Email: natlfx@sprintmail.com
Website: www.nfxf.org
National
Library Service for the Blind & Physically Handicapped
800-424-8567; 202-707-5100 (Voice)
Publications available in Spanish
E-Mail: nls@loc.gov
Website: www.loc.gov/nls
National
Mental Health Association
800-969-6642; 703-684-7722; 800-433-5959 (TTY)
Publications available in Spanish
Email: nmhainfo@aol.com
Website: www.nmha.org
National
Multiple Sclerosis Society
800-344-4867; 212-986-3240
Email: info@nmss.org
Website: www.nmss.org
National
Neurofibromatosis Foundation
800-323-7938; 212-344-6633
E-Mail: nnff@nf.org
Website: www.nf.org
National
Organization on Fetal Alcohol Syndrome (NOFAS)
800-666-6327; 202-785-4585
Email: nofas@erols.com
Website: www.nofas.org
National
Parent Network on Disabilities
202-463-2299 (V/TTY)
E-Mail: npnd@cs.com
Website: www.npnd.org
National
Parent to Parent Support and Information System, Inc.
800-651-1151; 706-374-3822
Email: nppsis@ellijay.com
Website: www.nppsis.org
National
Reye's Syndrome Foundation
800-233-7393; 419-636-2679
Email: nrsf@reyessyndrome.org
Website: www.reyessyndrome.org
National
Scoliosis Foundation
800-673-6922; 781-341-6333
Email: scoliosis@aol.com
National
Spinal Cord Injury Association
800-962-9629; 301-588-6959
Email: nscia2@aol.com
Website: www.spinalcord.org
National
Stuttering Association
800-364-1677; 714-693-7480
Email: nsastutter@aol.com
Website: www.nsastutter.org
National
Tuberous Sclerosis Association
800-225-6872; 301-459-9888
Email: ntsa@ntsa.org
Website: www.ntsa.org
Neurofibromatosis,
Inc.
800-942-6825; 301-577-8984
Email: NFInc1@aol.com
Website: www.nfinc.org
Obsessive
Compulsive Foundation, Inc.
203-315-2190
Email: info@ocfoundation.org
Website: www.ocfoundation.org
Oregon
Parents United
541-389-0004
Website: www.oregonparentsunited.org
Email: OPU@peak.org
Osteogenesis
Imperfecta Foundation
800-981-BONE; 301-947-0083
Email: bonelink@aol.com
Website: www.oif.org
Parents
Helping Parents: Parent-Directed Family Resource Center for Children
with Special Needs
408-727-5775
Publications available in Spanish; Spanish speaker on staff
Email: info@php.com
Website: www.php.com
Parents of Galactosemic
Children, Inc. (PGC)
775-626-0885
Website: www.galactosemia.org
Pathways
Awareness Foundation
800-955-2445; 312-236-7411 (TTY)
Brochure and video available in Spanish
Website: www.pathwaysawareness.org
Please Tutor Me.com
Email: tutor@pleasetutorme.com
Website: http://www.pleasetutorme.com/
Prader-Willi
Syndrome Association
800-926-4797; 941-312-0400
Email: pwsausa@aol.com
Website: www.pwsausa.org
President's
Committee's Job Accommodation Network
800-526-7234 (Voice/TTY)
Email: jan@.icdi.wvu.edu
Website: www.jan.wvu.edu
Recording
for the Blind and Dyslexic
800-221-4792; 609-452-0606
Email: custserv@rfbd.org
Website: www.rfbd.org
Registry
of Interpreters for the Deaf
301-608-0050 (V/TTY)
Email: info@rid.org
Website: www.rid.org
Special
Olympics International
202-628-3630
Publications available in Spanish and French; Spanish & French
speaker on staff
Email: specialolympics@msn.com
Website: www.specialolympics.org/
Spina
Bifida Association of America
800-621-3141; 202-944-3285
Publications available in Spanish
Email: sbaa@sbaa.org
Website: www.sbaa.org
Stuttering
Foundation of America
800-992-9392
Email: stuttersfa@aol.com
Website: www.stuttersfa.org
TASH
(formerly The Association for Persons with Severe Handicaps)
410-828-8274
(Voice); 410-828-1306 (TTY)
Email: info@tash.org
Website: www.tash.org
Technical
Assistance Alliance for Parent Centers (the Alliance)
888-248-0822; 952-838-9000
Spanish speaker on staff
Email: alliance@taalliance.org
Website: www.taalliance.org
Tourette
Syndrome Association
800-237-0717; 718-224-2999
Email: ts@tsa-usa.org
Website: http://tsa-usa.org/
Trace
Research & Development Center
608-262-6966; 608-262-5408 (TTY)
Email: info@trace.wisc.edu
Website: http://trace.wisc.edu/
United
Cerebral Palsy Association, Inc.
202-776-0406; 800-872-5827; 202-973-7197 (TTY)
Publications available in Spanish
E-Mail: ucpnatl@ucpa.org
Website: www.ucpa.org
Unlocking
Autism
mailing: P.O. Box 237
Walker, Louisiana 70785
physical: 9463 Florida Blvd., Suite D
Walker, Louisiana 70785
Phone:
225-665-7270
Fax: 225-665-7547
Website: http://www.unlockingautism.org/main.asp
US National Easter
Seals
230 West Monroe Street, Suite 1800
Chicago, IL 60606
312-726-6200 (voice)
312-726-4258 (tty)
312-726-1494 (fax)
800-221-6827 (toll-free)
Web: http://www.easter-seals.org/
Williams
Syndrome Association, Inc.
248-541-3630
