Contact Us
Phone: (812) 855-9396
Fax: (812) 855-9630
Toll Free: (800) 437-7924
Address: 2853 E. Tenth St.,
Bloomington, IN 47408
e-mail: cedir@indiana.edu
Disability Information > Dictionaries & Directories
Disability-Related Organizations, Associations and Foundations
This list was created to provide the general user with names, addresses, phone numbers, web sites, and email addresses of disability-related organizations, associations and foundations.
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z #
Select the first letter of the word from the list above to jump to appropriate section of the list. If the name you are looking for starts with a digit or symbol, choose the '#' link.
- A -
Acidemias, Organic
see: Organic Acidemias Association Inc. (OAA)
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cummings, GA 30041-6899
770-205-8211 (Voice)
770-205-0239 (FAX)
http://anausa.org
E-mail: anausa@aol.com
ADD Resources
Cynthia Hammer, MSW, Director
223 Tacoma Av So #100
Tacoma, WA 98402
253-759-5085 (Voice)
253-572-3700 (FAX)
http://www.addresources.org
E-mail: office@addresources.org
ALBINISM & HYPOPIGMENTATION
see: National Organization for Albinism &Hypopigmentation (NOAH)
Alexander Graham Bell Association
3417 Volta Place NW
Washington, DC 20007-2778
202-337-5220 (Voice)
202-337-5221 (TT)
202-337-8314 (FAX)
http://www.agbell.org
Alpha-1 Association
275 West Street, Suite 210
Annapolis, MD 21401
202-887-1900 (Voice)
800-521-3025 (Toll-Free, Voice)
202-887-1964 (FAX)
http://www.alpha1.org
E-mail: info@alpha1.org
American Association on Mental Retardation (AAMR)
444 N. Capitol Street NW, Suite 846
Washington, DC 20001-1512
800-424-3688 (Voice)
202-387-1968 (Voice)
202-387-2193 (FAX)
http://www.aamr.org
American Cancer Society
1599 Clifton Rd. NE
Atlanta, GA 30329
800-227-2345 (Toll free; Voice
404-320-3333 (Voice)
404-329-5787 (FAX)
http://www.cancer.org
American Cleft Palate-Craniofacial Association (fm Amercian Cleft Palate Association)
104 South Estes Drive, Suite 204
Chapel Hill, NC 27514
919-933-9044 (Voice)
919-933-9604 (FAX)
http://www.cleftline.org
E-mail: info@cleftline.org
American Council of the Blind
1155 15th Street NW, Suite 1004
Washington, DC 20005
800-424-8666 (Toll free; Voice)
202-467-5081 (Voice)
202-467-5058 (FAX)
http://acb.org
American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
800-342-2383 (Voice)
http://www.diabetes.org
American Foundation for the Blind (AFB)
11 Penn Plaza, Suite 300
New York, NY 10001
800-AFB-LINE (232-5463) (Toll free; Voice)
http://www.afb.org
E-mail: afbinfo@afb.org
American Heart Association
7272 Greenville Ave.
Dallas, TX 75231
800-242-8721
http://www.americanheart.org
E-mail: inquire@amhrt.org
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038, USA
800-GO-LIVER (465-4837) (Toll free; Voice)
http://www.liverfoundation.org
American Lung Association
1740 Broadway
New York, NY 10019
800-LUNG-USA (Voice)
212-265-5642 (FAX)
http://www.lungusa.org
E-mail: info@lungusa.org
American Paralysis Association
see Christopher Reeve Paralysis Foundation
American Porphyria Foundation
PO Box 22712
Houston, TX 77227
713-266-9617 (Voice)
http://www.porphyriafoundation.com
American Speech-Language-Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852
800-638-8255 (Voice/TTY)
http://www.asha.org
American Syringomyelia Alliance Project Inc. (ASAP)
PO Box 1586
Longview, TX 75606-1586
800-ASAP-282 (Toll free; Voice)
903-236-7079 (Voice)
903-757-7456 (FAX)
http://www.asap4sm.com
E-mail: info@ASAP.org
The Arc of the United States
National Headquarters
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
301-565-3842 (Voice)
301-565-5342 (FAX)
http://www.thearc.org
E-mail: info@thearc.org
Government Affairs Office
1730 K. Street NW, Suite 1212
Washington, DC 20006
202-785-3388 (Voice)
202-467-4179 (FAX)
http://www.thearc.org
E-mail: GAOinfo@thearc.org
Association for Retarded Citizens
see: The Arc of the United States
Association of Birth Defect Children (ABDC)
930 Woodcock Road, Suite 225
Orlando, FL 32803
407-895-0802 (Voice)
http://www.birthdefects.org
Association for Persons with Severe Handicaps (TASH)
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
410-828-8274 (Voice)
410-828-1306 (TT)
410-828-6706 (FAX)
http://www.tash.org
E-mail: info@tash.org
Association for Positive Behavior Support
PO Box 328
Bloomsburg, PA 17815
570-389-4081 (voice)
570-389-3980 (FAX)
http://www.apbs.org
E-mail: Tim Knoster
Asthma and Allergy Foundation of America
1233 20th Street, NW Suite 402
Washington, DC 20036
202-466-7643 (Voice)
202-466-8940 (FAX)
http://www.aafa.org
E-mail: info@aafa.org
Attention Deficit Disorder
see: Children &Adults With Attention Deficit Disorders (Ch.A.D.D.)
National Attention Deficit Disorder Association (ADDA)
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814-3015
800-3-AUTISM ext. 150 (Voice)
301-657-0881 (Voice)
301-657-0869 (FAX)
http://www.autism-society.org
- B -
Batten Disease Support & Research Association
120 Humphries Drive, Suite 2
Reynoldsburg, OH 43068
800-448-4570 (Voice)
740-927-4298 (Voice)
http://www.bdsra.org
E-mail: bdsra1@aol.com
Blind
see: Visual Impairments
Brain Injury Association of America
8201 Greensboro Drive, Suite 611
McLean, VA 22102
703-761-0750 (Voice)
800-444-6443 (Toll Free)
http://www.biausa.org
E-mail: FamilyHelpline@biausa.org
Brain Injury Association of Indiana
9531 Valparaiso Court, Suite A
Indianapolis, IN 46268
317-356-7722 (Voice)
800-407-4246 (Helpline-IN only)
http://www.biausa.org/Indiana
- C -
CANCER
see: American Cancer Society
Candlelighters Childhood Cancer Foundation
PO Box 498
Kensington, MD 20895
800-366-2223 (Toll Free)
301-962-3520 (Voice)
301-962-3521 (FAX)
http://www.candlelighters.org
E-mail: info@candlelighters.org
Celiac Disease Foundation (CDF)
13251 Ventura Boulevard, Suite 1
Studio City, CA 91604
818-990-2354 (Voice)
818-990-2379 (FAX)
http://www.celiac.org
E-mail: cdf@celiac.org
Celiac Sprue Association (CSA/USA)
PO Box 31700
Omaha, NE 68131-0700
402-558-0600 (Voice)
877-CSA-4CSA (Toll Free)
http://www.csaceliacs.org
email: celiacs@csaceliacs.org
Center for School Mental Health Assistance (CSMHA)
University of Maryland, Baltimore
Department of Psychiatry
737 W Lombard St, 4th Floor
Baltimore, MD 21201
888-706-0980 (Toll Free)
410-706-0980 (Voice)
http://csmha.umaryland.edu
CEREBRAL PALSY
see: United Cerebral Palsy Association
Children &Adults With Attention Deficit Disorders (Ch.A.D.D.)
8181 Professional Place, Suite 150
Landover, MD 20785
800-233-4050 (Voice)
301-306-7070 (Voice)
301-306-7090 (FAX)
http://www.chadd.org
Christopher Reeve Paralysis Foundation
500 Morris Avenue
Springfield, NJ 07081
800-225-0292 (Voice)
http://www.apacure.com
CLEFT PALATE
see: American Cleft Palate Association
Cornelia de Lange Foundation (Cornelia de Lange Syndrome)
302 W. Main Street #100
Avon, CT 06001
800-223-8355 (Toll free; Voice)
860-676-8166 (Voice)
860-676-8337 (FAX)
http://www.cdlsusa.org
E-mail: info@cdlsusa.org
Council for Children with Behavioral Disorders (CCBD)
see: Council for Exceptional Children (CEC)
Council for Exceptional Children (CEC)
1110 Glebe Road, Suite 300
Arlington, VA 22201-5704
888-CECSPED (Voice)
703-620-3660 (Voice)
703-264-9446 (TT)
703-264-9494 (FAX)
http://www.cec.sped.org
E-mail: cec@cec.sped.org
Council for Learning Disabilities
PO Box 4014
Leesburg, VA 20177
571-258-1010 (Voice)
571-258-1011 (FAX)
http://www.cldinternational.org
CRI DU CHAT SYNDROME
see: 5P Society
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
800-FIGHT-CF (Voice)
301-951-4422 (Voice)
301-951-6378 (FAX)
http://www.cff.org
E-mail: info@cff.org
- D -
Deaf and Hard of Hearing Services
402 W. Washington Street, W453
P.O. Box 7083
Indianapolis, IN 46207-7083
317-232-1143 (Voice or TTY)
800-962-8408 (Toll free)
317-233-1566 (FAX)
www.in.gov/fssa/disabilty/dhhs
Depression
see: National Foundation for Depressive Illness (NAFDI)
Depression and Bipolar Support Alliance (DBSA) - new name [formerly the National Depressive and Manic Depressive Association (NDMDA)]
730 N. Franklin, Suite 501
Chicago, IL 60610
800-826-3632 (Voice)
312-642-0049 (Voice)
312-642-7243 (FAX)
http://www.DBSAlliance.org
Developmental Disabilities
see: The Association for Persons with Severe Handicaps
National Association for Developmental Disabilities Council (NADDC)
see also specific disabilities, including Autism, Cerebral Palsy, Down Syndrome, Epilepsy, Mental Retardation
Diabetes
see: American Diabetes Association
Juvenile Diabetes Foundation International
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Down Syndrome
see: National Down Syndrome Society
UPSIDE! Down Syndrome Society
Dwarfism
see: Human Growth Foundation
Little People of America
Dyslexia
see: International Dyslexia Association
Dystonia Medical Research Foundation
1 E. Wacker Drive, Suite 2430
Chicago, IL 60601
312-755-0198 (Voice)
312-803-0138 (FAX)
http://www.dystonia-foundation.org
E-mail: dystonia@dystonia-foundation.org
- E -
Ehlers-Danlos National Foundation
6399 Wilshire Boulevard, Suite 1601 South Tower
Los Angeles, CA 90048
213-368-3800 (Voice)
213-427-0057 (FAX)
http://www.ednf.org
Epilepsy Foundation of America (EFA)
4351 Garden City Dr.
Landover, MD 20785
800-EFA-1000 (Voice)
301-459-3700 (Voice)
http://www.efa.org
- F -
FRAGILE X SYNDROME
see: FRAXA Research Foundation
FRAXA Research Foundation
45 Pleasant Street
Newbury Port, MA 01950
978-462-1866 (Voice)
978-463-9985 (FAX)
http://www.fraxa.org
E-mail: info@fraxa.org
- G -
GAUCHER DISEASE
see: National Gaucher Foundation USA
- H -
HEARING IMPAIRMENTS
see: Alexander Graham Bell Association
National Association of the Deaf
Self-Help for Hard of Hearing People (SHHH)
HEART DISORDERS
see: American Heart Association
Hemochromatosis Foundation
PO Box 8569
Albany, NY 12208-0569
518-489-0972 (Voice)
518-489-0027 (FAX)
http://www.americanhs.org
Hemophilia Foundation
116 West 32nd Street 11th Floor
New York, NY 10001
800-42-HANDI (Voice)
212-328-3700 (Voice)
212-328-3799 (FAX)
http://www.hemophilia.org
E-mail: handi@hemophilia.org
Hepatitis B Foundation
700 East Butler Avenue
Doylestwon, PA 18901-2697
215-489-4900 (Voice)
http://www.hepb.org
E-mail: info@hepb.org
Hepatitis C Foundation
No longer in service!
Human Growth Foundation (Dwarfism)
997 Glen Cove Avenue
Glen Head, NY 11545
800-451-6434 (Voice)
516-671-4055 (FAX)
http://www.hgfound.org
E-mail: hgfl@hgfound.org
Huntington Disease Society of America
158 West 29th Street, 7th Floor
New York, NY 10001-5300
800-345-4372 (Voice)
212-239-3430 (FAX)
http://www.hdsa.org
E-mail: hdsainfo@hdsa.org
Hydrocephalus Association
870 Market Street, Suite 705
San Francisco, CA 94102
888-598-3789 (Toll Free)
http://www.hydroassoc.org
Hydrocephalus Foundation, Inc. (HyFI)
910 Rear Broadway, Route 1
Saugus, MA 01906
617-942-1161 (Voice)
http://www.hydrocephalus.org
- I -
Immune Deficiency Foundation
40 W. Chesapeake Avenue, Suite 308
Towson, MD 21204
800-296-4433 (Voice)
http://www.primaryimmune.org
E-mail: idf@primaryimmune.org
INDEPENDENT LIVING
see: National Council for Independent Living
International Center for Disability Resources on the Internet (ICDRI)
5212 Covington Bend Drive
Raleigh, NC 27613
919-349-6661 (Voice)
http://www.icdri.org
E-mail: icdri@icdri.org
International Dyslexia Association (formerly Orton Dyslexia Society)
8600 LaSalle Road
Chester Building, Suite 382
Baltimore, MD 21286-2044
800-ABCD-123 (Toll free; Recorded Info)
410-296-0232 (Voice)
410-321-5069 (FAX)
http://www.interdys.org
International Joseph Disease Foundation Inc. (Machado-Joseph Disease)
PO Box 994268
Redding, CA 96099
530-246-4722 (Voice)
http://ijdf.net
E-mail: mjd@ijdf.net
International Rett Syndrome Association (IRSA)
9121 Piscataway Road
Clinton, MD 20735
800-818-RETT (Toll free; Voice)
301-856-3334 (Voice)
301-856-3336 (FAX)
http://www.rettsyndrome.org
E-mail: irsa@rettsyndrome.org
Iron Overload Diseases Association, Inc.
(send self addressed stamped envelope for information to:)
433 Westwind Drive
North Palm Beach, FL 33408
561-840-8512 (Voice)
561-840-8513 (Voice)
561-842-9881 (FAX)
http://www.ironoverload.org
E-mail: iod@ironoverload.org
- J -
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001
800-533-CURE (Voice)
212-785-9500 (Voice)
212-785-9595 (FAX)
http://www.jdrf.org
E-mail: info@jdrf.org
- K -
KIDNEY DISORDERS
see: National Kidney Foundation (NKF)
- L -
LEARNING DISABILITIES
see: Council for Learning Disabilities
Learning Disabilities Association (LDA)
Learning Disabilities Association (LDA)
4156 Library Road
Pittsburgh, PA 15234-1349
412-341-1515 (Voice)
412-344-0224 (FAX)
http://www.ldanatl.org
LEUKODYSTROPHY
see: United Leukodystrophy Foundation
Little People of America (Dwarfism)
5289 NE Elam Young Pkwy, Suite F-700
Hillsboro, OR 97124
888-LPA-2001 (Voice)
http://www.lpaonline.org
LIVER DISORDERS
see: American Liver Foundation
LPHS International Foundation (US)
341-B Chittenden Avenue
Columbus, OH 43201
614-291-2717 (Voice)
http://lphsint.org.freeservers.com
Loin Pain Hematuria Syndrome
see: LPHS International Foundation (US or UK)
LUNG DISEASES
see: American Lung Association
Lupus Foundation of America (LFA)
2000 L Street NW, Suite 710
Washington, DC 20036
202-349-1155 (Voice)
202-349-1156 (FAX)
http://www.lupus.org
- M -
MACHADO-JOSEPH DISEASE
see: International Joseph Disease Foundation Inc.
Maple Syrup Urine Disease Family Support Group
Attn: Joyce Brubacker
24806 SR 119
Goshen, IN 46526
574-862-2992 (Voice)
http://www.msud-support.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
888-663-4637 (Toll free; Voice)
http://www.modimes.org
MARFAN SYNDROME
see: National Marfan Foundation (NMF)
Mental Health America (formerly National Mental Health Association)
2000 N Beauregard St, 6th Floor
Alexandria, VA 22311
800-969-6642 (Info Line)
703-684-7722 (Voice)
800-433-5959 (TTY)
703-684-5968 (FAX)
http://www.mentalhealthamerica.net
MENTAL ILLNESS
see: Center for School Mental Health Assistance
National Alliance for the Mentally Ill
National Mental Health Association
MENTAL RETARDATION
see: American Association on Mental Retardation
The Arc of the United States
MULTIPLE SCLEROSIS
see: National Multiple Sclerosis Society
Muscular Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718
800-572-1717 (Toll free; Voice)
http://www.mdausa.org
email: mda@mdausa.org
Muscular Dystrophy Family Foundation
2330 North Meridian Street
Indianapolis, IN 46208-5730
800-544-1213 (Voice)
317-923-6333 (Voice)
317-923-6334 (FAX)
http://www.mdff.org
Myasthenia Gravis Foundation
1821 University Ave W, Suite S256
St Paul, MN 55104
651-917-6256 (Voice)
800-541-5454 (Toll Free)
http://myasthenia.org
- N -
National Alliance for the Mentally Ill
Colonial Place Three
2107 Wilson Boulevard, Suite 300
Arlington, VA 22201-3042
800-950-6264 (Voice)
703-524-7600 (Voice)
703-516-7227 (TTY)
703-524-9094 (FAX)
http://www.nami.org
National Association Council on Developmental Disabilities (NACDD)
225 Reinekers Ln, Suite 650-B
Alexandria, VA 22314
703-739-4400 (Voice)
703-739-6030 (FAX)
http://www.nacdd.org
National Association of the Deaf
814 Thayer Avenue
Silver Spring, MD 20910-4500
301-587-1788 (Voice)
301-587-1789 (TTY)
301-587-1791 (FAX)
http://www.nad.org
E-mail: NADinfo@nad.org
National Association of State Directors of Special Education (NASDSE)
1800 Diagonal Road, Suite 320
Alexandria, VA 22314
703-519-3800 (Voice)
703-519-7008 (TTY)
703-519-3808 (FAX)
http://www.nasdse.org/
National Attention Deficit Disorder Association (ADDA)
PO Box 543
Pottstown, PA 19464
484-945-2101 (Voice)
610-970-7520 (FAX)
http://www.add.org
National Brachial Plexus/Erb's Palsy Association, Inc.
P.O. Box 23
Larsen, WI 54947
http://www.nbpepa.org
E-mail: info@nbpepa.org
National Center for Learning Disabilities
381 Park Avenue South Suite 1401
New York, NY 10016
212-545-7510 (Voice)
212-545-9665 (FAX)
888-575-7373 (Toll-free)
http://www.ncld.org
National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
c/o Institute for Educational Leadership
1001 Connecticut Ave., NW, Suite 310
Washington, DC 20036
877 871-0744 (Toll Free)
http://www.ncwd-youth.info
National Council for Independent Living
1916 Wilson Boulevard, Suite 209
Arlington, VA 22201
703-525-3406 (Voice)
705-525-3409 (FAX)
http://www.ncil.org
E-mail: ncil@ncil.org
National Depressive and Manic Depressive Association (NDMDA)
see: Depression and Bipolar Support Alliance (DBSA) - new name
730 N. Franklin, Suite 501
Chicago, IL 60610
800-826-3632 (Voice)
312-642-0049 (Voice)
312-642-7243 (FAX)
http://www.DBSAlliance.org
National Down Syndrome Society
666 Broadway, 8th Floor
New York, NY 10012
800-221-4602 (Voice)
212-460-9330 (Voice)
212-979-2873 (FAX)
http://www.ndss.org
National Easter Seal Society
230 W. Monroe Street, Suite 1800
Chicago, IL 60606
800-221-6827 (Voice)
312-726-6200 (Voice)
312-726-4258 (TTY)
312-726-1494 (FAX)
http://www.easter-seals.org
E-mail: info@easter-seals.org
National Foundation for Depressive Illness (NAFDI)
PO Box 2257
New York, NY 10116
800-239-1265 (Toll free; Voice)
http://www.depression.org
National Gaucher Foundation USA
5410 Edson Ln, Suite 260
Rockville, MD 20852
800-428-2437 (Voice)
301-816-1515 (Voice)
301-816-1516 (FAX)
http://www.gaucherdisease.org
E-mail: ngf@gaucherdisease.org
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
National Institutes of Health
Office of Communications and Public Liaison
Building 31, Room 9A04
31 Center Drive, MSC 2560
Bethesda, MD 20892-2560
http://www.niddk.nih.gov/
National Institute of Neurological Disorders and Strokes
PO Box 5801
Bethesda, MD 20824
800-352-9424 (Toll Free)
301-468-5984 (TTY)
http://ninds.nih.gov
National Kidney Foundation (NKF)
30 E. 33rd Street
New York, NY 10016
800-622-9010 (Voice)
212-889-2210 (Voice)
212-689-9261 (FAX)
http://www.kidney.org
E-mail: info@kidney.org
National Marfan Foundation (NMF)
22 Manhasset Ave
Port Washington, NY 11050
800-8-MARFAN (Toll free; Voice)
516-883-8712 (Voice)
516-883-8040 (FAX)
http://www.marfan.org
E-mail: staff@marfan.org
National Mental Health Association (NMHA)
see: Mental Health America
National Multiple Sclerosis Society
733 3rd Avenue
New York, NY 10017
800-FIGHT-MS (344-4867) (Toll free; Voice)
http://www.nmss.org
email: info@nmss.org
National Organization for Albinism &Hypopigmentation (NOAH)
P.O. Box 959
East Hampstead, NH 03826-0959
800-473-2310 (Voice)
603-887-2310 (Voice/fax)
http://www.albinism.org
National Organization on Disability (NOD)
910 16th Street, Suite 600
Washington, DC 20006
202-293-5960 (Voice)
202-293-5968 (TTY)
202-293-7999 (FAX)
http://www.nod.org
E-mail: ability@nod.org
National Psoriasis Foundation
6600 SW 92nd Ave., Suite 300
Portland, OR 97223-7195
503-244-7404 OR 800.723.9166 (Voice)
503-245-0626 (FAX)
http://www.psoriasis.org
E-mail: getinfo@psoriasis.org
National PTA
330 N. Wabash Avenue, Suite 2100
Chicago, IL 60611
800-307-4782 (Voice)
312-670-6782 (Voice)
312-670-6783 (FAX)
http://www.pta.org
E-mail: info@pta.org
National Spinal Cord Injury Association
6701 Democracy Blvd, Suite 300-9
Bethesda, MD 20817
800-962-9629 (Voice)
301-214-4006 (Voice)
301-881-9817 (Fax)
http://spinalcord.org
E-mail: info@spinalcord.org
National Stroke Association
9707 East Easter Lane
Englewood, CO 80112
800-787-6537 (Voice)
303-649-9299 (Voice)
303-649-1328 (FAX)
http://www.stroke.org
National Tay-Sachs and Allied Diseases Association
2001 Beacon Street, Suite 204
Brighton, MA 02135
800-906-8723 (Voice)
617-277-0134 (FAX)
http://www.ntsad.org
National Tourette Syndrome Association
42-40 Bell Boulevard
Bayside, NY 11361-2820
718-224-2999 (Voice)
718-224-9569 (FAX)
http://www.tsa-usa.org
NEUROLOGICAL DISORDERS
see: National Institute of Neurological Disorders and Strokes
- O -
Organic Acidemias Association Inc. (OAA)
13210 35th Avenue North
Plymouth, MN 55441
763-559-1797 (Voice)
763-694-0017 (FAX)
Orton Dyslexia Society
see: International Dyslexia Association
Osteogenesis Imperfecta Foundation
804 W. Diamond Avenue, Suite 210
Gaithersburg, MD 20878
800-981-2663 (Voice)
301-947-0083 (Voice)
301-947-0456 (FAX)
http://www.oif.org
E-mail: bonelink@oif.org
- P -
PHYSICAL DISABILITIES
see: American Paralysis Association
PORPHYRIA
see: American Porphyria Foundation
Prader-Willi Foundation Inc.
Not in service
Prader-Willi Syndrome Association
5700 Midnight Pass Road, Suite 6
Sarasota, FL 34242
800-926-4797 (Voice)
941-312-0400 (Voice)
941-312-0142 (FAX)
http://www.pwsausa.org
E-mail: national@pwsausa.org
Project Participate
University of Colorado Health Science Center
4200 E 9th Avenue, C268-20
Denver, CO 80262
303-315-2318 (Voice)
303-315-5641 (Fax)
http://www.projectparticipate.org
E-mail: info@projectparticipate.org
- Q -
(Empty)
- R -
Retinitis Pigmentosa Foundation
Executive Plaza One, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
800-683-5555 (Voice)
410-771-9470 (Voice)
410-785-9687 (TTY)
410-225-3936 (FAX)
RETT SYNDROME
see: International Rett Syndrome Association (IRSA)
Reye's Society (Reye Syndrome)
P.O. Box 829
Bryan, OH 43506-0829
800-233-7393 (Voice)
- S -
Scleroderma Foundation
12 Kent Way, Suite 101
Byfield, MA 01922
Help Line: 800-722-4673 (Voice)
http://www.scleroderma.org
E-mail: sfinfo@scleroderma.org
Self-Help for Hard of Hearing People (SHHH)
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
301-657-2248 (Voice)
301-657-2249 (TTY)
301-913-9413 (FAX)
http://www.shhh.org
Sickle Cell Disease Association of America
16 S Calvert St, Suite 600
Baltimore, MD 21202
800-421-8453 (Voice)
http://www.sicklecelldisease.org
E-mail: scdaa@sicklecelldisease.org
Spina Bifida Association of America
4590 MacArthur Boulevard NW, Suite 250
Washington, DC 20007-4226
800-621-3141 (Voice)
202-944-3285 (Voice)
202-944-3295 (FAX)
http://www.sbaa.org
E-mail: sbaa@sbaa.org
SPINAL CORD INJURY
see: National Spinal Cord Injury Association
Spinal Cord Society
19051 County Highway 1
Fergus Falls, MN 56537-7609
218-739-5252 (Voice)
218-739-5261 (Voice)
218-739-5262 (FAX)
http://users.aol.com/scsweb
STROKES
see: National Institute of Neurological Disorders and Strokes
National Stroke Association
SYRINGOMYELIA
see: American Syringomyelia Alliance Project
- T -
TAY-SACHS
see: National Tay-Sachs and Allied Diseases Association
TOURETTE SYNDROME
see: National Tourette Syndrome Association
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
800-225-6872 (Voice)
301-562-9890 (Voice)
301-562-9870 (FAX)
http://www.tsalliance.org
E-mail: ntsa@ntsa.org
The Turner's Syndrome Society of the US
14450 T. C. Jester, Suite 260
Houston, TX 77014
800-365-9944 (Voice)
832-249-9988 (Voice)
832-249-9987 (FAX)
http://www.turnersyndrome.org
- U -
United Cerebral Palsy Association
1660 L Street NW, Suite 700
Washington, DC 20036
800-USA-5UCP (Toll free; Voice)
202-776-0406 (Voice)
202-973-7197 (TTY)
202-776-0414 (FAX)
http://www.ucp.org
United Cerebral Palsy Association of Greater Indiana
1915 W 18th Street - Suite C
Indianapolis, IN 46202-1016
317-632-3561
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
800-728-5483 (Toll free; Voice)
815-895-2432 (FAX)
http://www.ulf.org
UPSIDE! Down Syndrome Society
http://www.telebyte.com/upside/upside.html
- V -
VISUAL IMPAIRMENTS
see: American Council of the Blind
American Foundation for the Blind
- W -
Williams Syndrome Association
P.O. Box 297
Clawson, MI 48017-0297
248-244-2229 (Voice)
800-806-1871 (Toll Free)
248-244-2230 (FAX)
http://www.williams-syndrome.org
Williams Syndrome Foundation
University of California
Irvine, CA 92697
949-824-7259 (Voice)
http://www.wsf.org
Wilson's Disease Association
4 Navaho Drive
Brookfield, CT 06810
800-399-0266 (Voice)
203-775-9660 (Voice)
http://www.wilsondisease.org
- X -
(Empty)
- Y -
(Empty)
- Z -
(Empty)
- # -
5P Society (Cri Du Chat Syndrome)
7108 Katella Avenue #502
Stanton, CA 90680
888-970-0777 (Voice)
913-469-8900 (Voice)
913-469-5246 (FAX)
http://www.fivepminus.org
Note: Original List Compiled 10/15/98 by Marianne Mercer and Marilyn Irwin.
List updated 3/19/01; new additions-3/05/02; new additions-7/01/02; new additions- 12/18/02, new additions- 05/18/04.