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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

Bipolar support group for parents of kids with early-onset Bipolar Disorder
Web: http://www.groups.yahoo.com/group/MAPBPKIDS

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/

Childhood Apraxia of Speech Association
Helpline: 412-343-7102
Email: helpdesk@apraxia-kids.org
Website: http://www.apraxia-kids.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

Cleft Advocate
702-228-8662; fax: 702-341-5351
E-mail: debbie@cleftadvocate.org
Web: http://www.cleftadvocate.org
Cleft Advocate provides educational and networking opportunities for cleft lip/palate and other craniofacial patients and their families, including assistance with insurance issues.

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

DAC (disabled Action committee)
Keith Kessler - Founder
14405 Artery Ln#11
Dale City, VA 22193
(703) 878-1737
Email: DAC4VA@aol.com

Web: http://members.aol.com/DAC4VA/index.html

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

EMPOWER Colorado
2200 S. Jasmine Street
Denver, CO 80222
1-866-213-4631
Email: info@empowercolorado.com
Website: www.empowercolorado.com
EMPOWER Colorado (Educational Movement: Parents Offering Wisdom Encouragement & Resources) Offers support, education and advocacy for families of children and adolescents with mental health needs.

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

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

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

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 & Dyslexic
20 Roszel Road
Princeton, NJ 08540
(800) 221-4792; Fax: (609) 987-8116
E-mail: teachersaide@frbd.org
Web: http://www.rfbd.org

Registry of Interpreters for the Deaf
301-608-0050 (V/TTY)
Email: info@rid.org
Website: www.rid.org

Smart Kids with Learning Disabilities
PO Box 2726
Westport, CT 06880
(203) 226-6831
E-mail: Info@SmartKidswithLD.org
Web: www.SmartKidswithLD.org
Smart Kids with Learning Disabilities is a non-profit organization producing a national newsletter for parents of children with LD and ADHD (mailed to members in 49 states) and maintaining a website at www.SmartKidswithLD.org that is recommended by the CCLD. We also offer regional outreach programs.

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/

Uniquely Gifted
Internet Resources for Gifted/Special Needs Children
Web: http://www.uniquelygifted.org

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

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

 

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