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 (ASPENŽ)
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; 925-938-9300
Email: NATLFX@FragileX.org
Website: www.fragilex.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
