ORGANIZATIONS
The following is an alphabetical compilation of organizations listed in the Resources section of the main body entries. Although the list is comprehensive, it is by no means exhaustive. It is a starting point for gathering further information. Many of the organizations listed provide information for multiple disorders and have links to additional related websites. Email addresses and web addresses listed were provided by the associations; Thomson Gale is not responsible for the accuracy of the addresses or the contents of the websites.
5p—Society
7108 Katella Ave. #502
Stanton, CA 90680
Phone: (888) 970-0777
Website: http://www.fivepminus.org
22q13 Deletion Syndrome Foundation
250 East Broadway
Maryville, TN 37804
Phone: (800) 932-2943
Website: http://www.22q13.com
A
A-T Children's Project
668 South Military Trail
Deerfield Beach, FL 33442
Phone: (800) 5-HELP-A-T
Website: http://www.atcp.org
A-T Medical Research Foundation
5241 Round Meadow Road
Hidden Hills, CA 91302
Website: http://www.pathnet.medsch.ucla.edu/people/faculty/gatti/gatsign.htm
AboutFace International
123 Edwards Street, Suite 1003
Toronto, ON M5G 1E2
Canada
Phone: (800) 665-FACE
Email: info@aboutfaceinternational.org
Website: http://www.aboutfaceinternational.org
AboutFace USA
PO Box 458
Crystal Lake, IL 60014
Phone: (312) 337-0742 or (888) 486-1209
E-mail: aboutface2000@aol.com
Website: http://www.aboutface2000.org
Achromatopsia Network
C/O Frances Futterman
PO Box 214
Berkeley, CA 94701-0214
Website: http://www.achromat.org/how_to_join.html
Acid Maltase Deficiency Association (AMDA)
PO Box 700248
San Antonio, TX 78270-0248
Phone: (210) 494-6144 or (210) 490-7161
Fax: (210) 490-7161 or (210) 497-3810
Website: http://www.amda-pompe.org
Agenesis of the Corpus Callosum (ACC) Network
University of Maine
Merrill Hall, Room 18, 5749
Orono, ME 04469-5749
Phone: (207) 581-3119
E-mail: um-acc@maine.edu
Aicardi Syndrome Awareness and Support Group
29 Delavan Ave.
Toronto, ON M5P 1T2 Canada
Phone: (416) 481-4095
Aicardi Syndrome Foundation
450 Winterwood Dr.
Roselle, IL 60172
Phone: (800) 373-8518.
Website: http://www.aicardi.com
AIS Support Group (AISSG)
PO Box 269, Banbury
Oxon, OX15 6YT
United Kingdom
Website: http://www.medhelp.org/www/ais
AKU Hotline
Website: http://www.goodnet.com/~ee72478/enable/hotline.htm
Alcoholics Anonymous World Services
PO Box 459, Grand Central Station
New York, NY 10163
Phone: (212) 870-3400
Alexander Graham Bell Association for the Deaf, Inc.
3417 Volta Place NW
Washington, DC 20007-2778.
Phone: (800) 432-7543
Website: http://www.agbell.org
Allergy and Asthma Network. Mothers of Asthmatics, Inc.
2751 Prosperity Ave., Suite 150
Fairfax, VA 22031
Phone: (800) 878-4403
Fax: (703) 573-7794
Alliance of Genetic Support Groups
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008
Phone: (202) 966-5557
Fax: (202) 966-8553
Website: http://www.geneticalliance.org
Alpha 1 National Association
8120 Penn Ave. South, Suite 549
Minneapolis, MN 55431
Phone: (612) 703-9979 or (800) 521-3025
E-mail: julie@alpha1
Website: http://www.alpha1.org
Alpha One Foundation
2937 SW 27th Ave., Suite 302,
Miami, FL 33133.
Phone: (305) 567-9888 or (877) 228-7321.
E-mail: mserven@alphaone.
Website: http://www.alphaone.org
Alpha to Alpha
RR#5 Box 859
Warsaw, MO 65355
Phone: (660) 438-3045
Website: http://www.alpha2alpha.org
AlphaNet
Phone: (800) 557-2638
Website: http://www.alphanet.org
ALS Association of America (ALSA)
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
Phone: (818) 800-9006
Fax: (818) 880-9006
Website: http://www.alsa.org
Alzheimer's Association
919 North Michigan Ave., Suite 1000
Chicago, IL 60611-1676
Phone: (800) 272-3900
Alzheimer's Disease Education and Research (ADEAR)
National Institute on Aging. P.O. Box 8250
Silver Spring, MD 20907-8250
Phone: (800) 4388-4380)
Website: http:www.alzheimers.org
Alzheimer's Disease International
45/46 Lower Marsh
London, SE1 7RG
United Kingdom
Phone: (+44 20) 7620 3011
E-mail: adi@alz.co.uk
Website: http://www.alz.co.uk
Ambiguous Genitalia Support Network
PO Box 313
Clements, CA 95227-0313
Phone: (209) 727-0313
Fax: (209) 727-0313
E-mail: agsn@jps.net
Website: http://www.stepstn.com
AMD Alliance International
PO Box 550385
Atlanta, GA 30355
Phone: (877) 263-7171
Website: http://www.amdalliance.org
American Academy of Allergy, Asthma & Immunology
611 E. Wells Street
Milwaukee, WI 53202
Phone: (414) 272-6071
Fax: (414) 272-6070
Website: http://www.aaaai.org
American Academy of Dermatology
PO Box 4014, 930 N. Meacham Road
Schaumburg, IL 60168-4014
Phone: (847) 330-0230
Fax: (847) 330-0050
Website: http://www.aad.org
American Academy of Ophthalmology
PO Box 7424
San Francisco, CA 94120-7424
Phone: (415) 561-8500
Website: http://www.eyenet.org
American Academy of Orthopaedic Surgeons
P.O. Box 2058
Des Plaines, IL 60017
Phone: (800) 824-2263
Website: http://www.aaos.org
American Academy of Pediatrics
141 Northwest Point Boulevard
Elk Grove Village, IL 60007-1098
Phone: (847) 434-4000
Fax: (847) 434-8000
Website: http://www.aap.org/visit/contact.htm
American Association for Klinefelter Syndrome Information and Support (AAKSIS)
2945 W. Farwell Ave.
Chicago, IL 60645-2925
Phone: (773) 761-5298 or (888) 466-5747
Fax: (773) 761-5298
Website: http://www.aaksis.org
E-mail: aaksis@aaksis.org
American Association for Pediatric Ophthalmology and Strabismus
Website: http://med-aapos.bu.edu/
American Association of the Deaf-Blind
814 Thayer Ave., Suite 302
Silver Spring, MD 20910
Phone: (301) 588-6545, (301) 495-4403
TTY
Phone: (301) 495-4402
Fax: (301) 495-4404
Email: info@aadb.org
Website: http://www.aadb.org
American Association of Kidney Patients
3505 E. Frontage Rd., Ste. 315
Tampa, FL, 33607-1796
Phone: (800) 749-2257, (813) 636-8100
Fax: (813) 636-8122
Email: info@aakp.org
Website: http://www.aakp.org
American Association on Mental Retardation (AAMR)
444 North Capitol Street NW, Suite 846
Washington, DC 20001-1512
Phone: (800) 424-3688.
Website: http://www.aamr.org
American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
Phone: (800) 227-2345
Website: http://www.cancer.org
American Cleft Palate-Craniofacial Association
104 South Estes Dr., Suite 204
Chapel Hill, NC 27514
Phone: (919) 993-9044
Fax: (919) 933-9604
Website: http://www.cleftline.org
American College of Obstetricians and Gynecologists
PO Box 96920, 409 12th Street SW
Washington, DC 20090-6920
Website: http://www.acog.org
American College of Rheumatology
1800 Century Place, Suite 250
Atlanta, GA 30329
Phone: (404) 633-3777
Website: http://www.rheumatology.org
American Council of the Blind
1155 15th Street NW, Suite 720
Washington, DC 20005
Phone: (202) 467-5081 or (800) 424-8666
Website: http://www.acb.org
American Diabetes Association
1701 N. Beauregard Street
Alexandria, VA 22311
Phone: (703) 549-1500 or (800) 342-2383
Website: http://www.diabetes.org
American Epilepsy Society
342 North Main Street
West Hartford, CT 06117
Phone: (860) 586-7505
Fax: (860 586-7550
E-mail: info@aesnet
Website: http://www.aesnet.org
American Foundation for the Blind
11 Penn Plaza, Suite 300
New York, NY 10001
Phone: (800) 232-5463
American Foundation for Urologic Disease, Inc.
1128 North Charles Street
Baltimore, MD 21201-5559
Phone: (410) 468-1808
Website: http://www.afud.org
American Hair Loss Council
Phone: (888) 873-9719
Website: http://www.ahlc.org
American Heart Association
7272 Greenville Ave.
Dallas, TX 75231-4596
Phone: (214) 373-6300 or (800) 242-8721
E-mail: inquire@heart
Website: http://www.americanheart.org
American Hemochromatosis Society, Inc.
777 E. Atlantic Ave., PMB Z-363
Delray Beach, FL 33483-5352
Phone: (561) 266-9037 or (888) 655-IRON (4766)
E-mail: ahs@emi.net
Website: http://www.americanhs.org
American Kidney Fund
Suite 1010, 6110 Executive Boulevard
Rockville, MD 20852
Phone: (899) 638-8299
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
Phone: (800) 465-4837 or (888) 443-7222
Website: http://www.liverfoundation.org
American Lung Association
1740 Broadway
New York, NY 10019-4374
Phone: (212) 315-8700 or (800) 586-4872
Website: http;//www.lungusa.org
American Macular Degeneration Foundation
PO Box 515
Northampton, MA 01061-0515
Phone: (413) 268-7660
Website: http://www.macular.org
American Medical Association
Washington Office
1101 Vermont Ave. NW
Washington, DC 20005
Phone: (202) 789-7400
Website: http://www.ama-assn.org
American Nystagmus Network
PO Box 45
Jenison, MI 49429-0045
Website: http://www.nystagmus.org
American Optometric Association
243 North Lindbergh Boulevard
St. Louis, MO 63141
Phone: (314) 991-4100
Website: http://www.aoanet.org
American Porphyria Foundation
PO Box 22712
Houston, TX 77227
Phone: (713) 266-9617
Website: http://www.enterprise.net/apf/
American Pseudo-Obstruction & Hirschsprung's Society
158 Pleasant Street
North Andover, MA 01845
Phone: (978) 685-4477
American Psychiatric Association
1400 K Street NW
Washington, DC 20005
Phone: (202) 682-6220
American Sleep Disorders Association
1610 14th Street NW, Suite 300
Rochester, MN 55901
Phone: (507) 287-6006
American Society for Deaf Children
PO Box 3355
Gettysburg, PA 17325
Phone: (800) 942-ASDC or (717) 334-7922 (v/tty)
Email: asdc@deafchildren.org
Website: http://www.deafchildren.org
American Society for Dermatologic Surgery
1567 Maple Ave.
Evanston, IL 60201
Phone: (708) 869-3954
American Society for Reproductive Medicine
1209 Montgomery Highway
Birmingham, AL 35216-2809
Phone: (205) 978-5000
E-mail: asrm@asrm
Website: http://www.asrm.org
American Society of Human Genetics
9650 Rockville Pike
Bethesda, MD 20814-3998
Phone: (301) 571-1825
Website: http://www.faseb.org/genetics/ashg/ashgmenu.htm
American Society of Hypertension
515 Madison Ave., Suite 1212
New York, 10022
Phone: (212) 644-0600
Website: http://www.ash-us.org
American Syringomelia Project
PO Box 1586
Longview, TX 75606-1586
Phone: (903) 236-7079
American Thyroid Association
Townhouse Office Park, 55 Old Nyack
Turnpike, Suite 611
Nanuet, NY 10954
Website: http://www.thyroid.org
Anemia Institute for Research and Education
151 Bloor Street West, Suite 600
Toronto, ON M5S 1S4
Canada
Phone: (877) 99-ANEMIA
Website: http://www.anemiainstitute.net
Angelman Syndrome Foundation
414 Plaza Dr., Suite 209
Westmont, IL 60559-1265
Phone: (630) 734-9267 or (800) 432-6435
Fax: (630) 655-0391
E-mail: info@angelman.org
Website: http://www.angelman.org
Anxiety Disorders Association of America
11900 Parklawn Dr., Suite 100
Rockville, MD 20852
Phone: (301) 231-9350
Fax: (301) 231-7392
E-mail: anxdis@adaa.org
Apert Syndrome Support Group
8708 Kathy
Street Louis, MO 63126
Phone: (314) 965-3356
Aplastic Anemia Foundation
PO Box 613
Annapolis, MD 21404-0613
Phone: (800) 747-2820
Website: http://www.aplastic.org
Arc (A National Organization on Mental Retardation)
1010 Wayne Ave., Suite 650
Silver Spring, MD 20910
Phone: (800) 433-5255
Website: http://www.tharclink.org
Arc of the United States (formerly Association for Retarded Citizens of the US)
500 East Border Street, Suite 300
Arlington, TX 76010
Phone: (817) 261-6003
Website: http://thearc.org
Arc's Fetal Alcohol Syndrome Resource Guide
The Arc's Publication Desk
3300 Pleasant Valley Lane, Suite C,
Arlington, TX 76015
Phone: (888) 368-8009
Website: http://www.thearc.org/misc/faslist.html
Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
Phone: (800) 283-7800
Website: http://www.arthritis.org
Arthrogryposis Group (TAG)
1 The Oaks, Gillingham
Dorset, SP8 4SW
United Kingdom
Phone: 01-747-822655
Website: http://tagonline.uk
Association for Glycogen Storage Disease (United Kingdom)
Phone: 0131 554 2791
Fax: 0131 244 8926
Website: http://www.agsd.uk
Association for Frontotemporal Dementias (AFTD)
P.O. Box 7191
St. David's, PA 19087-7191
Email: info@ftd-picks.org
Website: http://www.ftd-picks.org
Association for Macular Diseases, Inc.
210 East 64th Street
New York, NY 10021
Phone: (212) 605-3719
E-mail: 2020@nei.nih.gov
Website: http://www.macula@macula.org
Association for Neuro-Metabolic Disorders
5223 Brookfield Lane
Sylvania, OH 43560-1809
Phone: (419) 885-1497
Association for Science in Autism Treatment
175 Great Neck Road, Suite 406
Great Neck, NY 11021
Phone: (516) 466-4400
Fax: (516) 466-4484
Email: asat@autism-treatment
Association for Spina Bifida and Hydrocephalus
42 Park Road
Peterborough, PE1 2UQ
United Kingdom
Phone: 0173 355 5988
Fax: 017 3355 5985
E-mail: postmaster@asbah
Website: http://www.asbah.demon.co.uk
Association for the Bladder Exstrophy Community
PO Box 1472
Wake Forest, NC 27588-1472
Phone: (919) 624-9447
Website: http://www.bladderexstrophy.com/support.htm
Association of Birth Defects in Children
930 Woodcock Road, Suite 225
Orlando, FL 32803
Phone: (407) 895-0802
Website: http://www.biethdefects.org
Association Strumpell-Lorrain
7 D rue des Granges, Besancon, Intl
25000, France
Phone: (038) 150 2391
Website: http://perso.wanadoo.fr/asl.spastic/anglasl/englindx.htm
Asthma and Allergy Foundation of America (AAFA)
1233 20th Street NW, Suite 402
Washington, DC 20036
Phone: (800) 7-ASTHMA
Fax: (202) 466-8940
Website: http://www.aafa.org
The A-T Project
3002 Enfield Road
Austin, TX 78703
Phone: (512) 472-4892
Website: http://www.atproject.org
Ataxia MJD Research Project, Inc.
875 Mahler Road, Suite 161
Burlingame, CA 94010-1621
Phone: (650) 259-3984
Fax: (650) 259-3983
Website: http://www.ataxiamjd.org
Autism Research Institute
4182 Adams Ave.
San Diego, 92116
Fax: (619) 563-6840
Autism Society of America
7910 Woodmont Ave. Suite 300
Bethesda, MD 20814-3015
Phone: (301) 657-0881 or (800) 3-AUTISM
Website: http://www.autism-society.org
AVENUES National Support Group for Arthrogryposis Multiplex Congenita
PO Box 5192
Sonora, CA 95370
Phone: (209) 928-3688
Email: avenues@sonnet.com
Website: http://www.sonnet.com/avenues
B
Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.
Mount Sinai Medical Center, One Gus-tave L. Levy Place, Box 1490
New York, NY 10029
Phone: (212) 241-5614
Website: http://www.dystonia-parkinsons.org
Battens Disease Support and Research Association
2600 Parsons Ave.
Columbus, OH 43207
Phone: (800) 448-4570
Website: http://www.bdsra.org
BCCNS Life Support Network
PO Box 321
Burton, OH 44021
Phone: (866) 834-1895 (Toll Free), (440) 635-0078
Fax: (440) 635-0078
Email: info@bccns.org
Website: http://www.bccns.org
Beckwith-Wiedemann Support Network
2711 Colony Road
Ann Arbor, MI 48104
Phone: (734) 973-0263 or (800) 837-2976
Website: http://www.beckwithwiedemann.org
Blind Children's Fund
4740 Okemos Road
Okemos, MI 48864-1637
Phone: (517) 347-1357
Website: http://www.blindchildrensfund.org
Boys Town National Research Hospital
555 N. 30th Street
Omaha, NE 68131
Phone: (402) 498-6749
Website: http://www.boystown.org/Btnrh/Index.htm
C
Canadian Hemophilia Society
625 President Kennedy, Suite 1210
Montreal, QUE H3A 1K2
Canada
Phone: (514) 848-0503
Fax: (514) 848-9661
E-mail: chs@hemophilia.ca
Website: http://www.hemophilia.ca/english/index.html
Canadian Multiple Endocrine Neoplasia Type 1 Society, Inc. (CMEN)
PO Box 100
Meota, SK S0M 1X0
Canada
Phone: (306) 892-2080
The Canadian National Institute for the Blind
National Office, 1929 Bayview Avenue
Toronto, ON M4G 3E8
Phone: (416) 486-2500
Fax: (416) 480-7677
Website: http://cnib.ca
Canadian Opitz Family Network
Box 892
Errington, BC V0R 1V0
Canada
Phone: (250) 954-1434
Fax: (250) 954-1465
E-mail: opitz@apollos.net
Website: http://www.apollos.net/arena/opitz/start.html
Canadian Society for Mucopolysaccharide and Related Diseases
PO Box 64714
Unionville, ON L3R-OM9
Canada
Phone: (905) 479-8701 or (800) 667-1846
Website: http://www.mpssociety.ca
Canavan Foundation
320 Central Park West, Suite 19D
New York, NY 10025
Phone: (212) 877-3945
Canavan Research Foundation
Fairwood Professional Building
New Fairwood, CT 06812
Phone: (203) 746-2436
E-mail: canavan_research@hotmail.com
Website: http://www.canavan.org
Cardiac Arrhythmias Research and Education Foundation, Inc.
2082 Michelson Dr., #301
Irvine, CA 92612-1212
Phone: (949) 752-2273 or (800) 404-9500
Email: care@longqt.org
Website: http://www.longqt.org
Cardio-Facio-Cutaneous Syndrome Foundation
3962 Van Dyke Street
White Bear Lake, MN 55110
Website: http://www.cfcfoundation.com
CardioFacioCutaneous Support Network
157 Alder Ave.
McKee City, NJ 08232
Phone: (609) 646-5606
Cardiofaciocutaneous Syndrome Family Network
183 Brown Road
Vestal, NY 13850
Phone: (607) 772-9666
Website: http://www.cfcsyndrome.org
Center for Loss in Multiple Birth, Inc. (CLIMB)
PO Box 1064
Palmer, AK 99654
Phone: (907) 222-5321
Center for Neurologic Study
9850 Genesee Ave., Suite 320
Lajolla, CA 92037
Phone: (858) 455-5463
Fax: (858) 455-1713
E-mail: cns@cts.com
Website: http://www.cnsonline.org
Center for Study of Multiple Birth
334 E. Superior Street, Suite 464
Chicago, IL 60611
Phone: (312) 266-9093
Website: http://www.multiplebirth.com
Centers for Disease Control
GDP Office, 4770 Buford Highway NE
Atlanta, GA 30341-3724
Phone: (770) 488-3235
Website: http://www.cdc.gov/genetics
Changing Faces
1 & 2 Junction Mews
London, W2 1PN
United Kingdom
Phone: 0207 706 4232
E-mail: info@changingfaces.co.uk
Website: http://www.changingfaces.co.uk
Charcot Marie Tooth Association (CMTA)
2700 Chestnut Parkway
Chester, PA 19013
Phone: (610) 499-9264 or (800) 606-CMTA
Fax: (610) 499-9267
E-mail: cmtassoc@aol.com
Website: http://www.charcot-marietooth.org
CHARGE Family Support Group
82 Gwendolen Ave.
London, E13 ORD
United Kingdom
Phone: 020-8552-6961
Website: http://www.widerworld.co.uk/charge
CHARGE Syndrome Foundation
2004 Parkade Boulevard
Columbia, MO 65202-3121
Phone: (800) 442-7604
Website: http://www.chargesyndrome.org
CHASER (Congenital Heart Anomalies Support, Education, and Resources)
2112 North Wilkins Road
Swanton, OH 43558
Phone: (419) 825-5575
Website: http://www.csun.edu/~hfmth006/chaser
Cherub Association of Families & Friends of Limb Disorder Children
8401 Powers Road
Batavia, NY 14020
Phone: (716) 762-9997
Children and Adults with Attention/Hyperactivity Deficit Disorder
8181 Professional Place, Suite 150
Landover, MD 20785
Phone: (800) 233-4050
Website: http://www.chadd.org
Children Living with Inherited Metabolic Diseases
The Quadrangle, Crewe Hall, Weston
Road, Crewe
Cheshire, CW1-6UR
United Kingdom
Phone: 127 025 0221
Fax: 0870-7700-327
Website: http://www.climb.uk
Children's Blood Foundation
333 East 38th Street, Room 830
New York, NY 10016-2745
Phone: (212) 297-4336
E-mail: cfg@nyh.med.cornell.edu
Children's Brain Disease Foundation
350 Parnassus Ave., Suite 900
San Francisco, CA 94117
Phone: (415) 566-5402
Children's Brittle Bone Foundation
7701 95th Street
Pleasant Prairie, WI 53158
Phone: (847) 433-498
Website: http://www.cbbf.org
Children's Craniofacial Association
PO Box 280297
Dallas, TX 75243-4522
Phone: (972) 994-9902 or (800) 535-3643
E-mail: contactcca@ccakids.com
Website: http://www.ccakids.com
Children's Gaucher Research Fund
PO Box 2123
Granite Bay, CA 95746-2123
Phone: (916) 797-3700
Fax: (916) 797-3707
Website: http://www.childrensgaucher.org
Children's Mitochondrial Disease Network
Mayfield House, 30 Heber Walk,
Chester Way,
Northwich, CW9 5JB
United Kingdom
Phone: 01606 44733
Website: http://www.emdnmitonet.co.uk
Choroideremia Research Foundation
23 E. Brundreth Street
Springfield, MA 01109
Website: http://www.choroideremia.org
Chromosome 18 Registry and Research Society
6302 Fox Head
San Antonio, TX 78247
Phone: (210) 567-4968
Website: http://www.chromosome18.org
Chromosome 22 Central
237 Kent Avenue
Timmins, ON Canada P4N 3C2
Phone: (705) 268-3099
Email: a815@c22c.org
US Head Office:
7108 Partinwood Drive
Fuquay-Varina, NC 27526
Phone: (919) 567-8167
Email: bgr@nc.rr.com
Website: http://www.c22c.org
Chromosome Deletion Outreach, Inc.
PO Box 724
Boca Raton, FL 33429-0724
Phone: (561) 395-4252
Email: info@chromodisorder.org
Website: http://www.chromodisorder.org
CMT International
Attn: Linda Crabtree
1 Springbank
Dr. St. Catherine's, ON L2S2K1
Canada
Phone: (905) 687-3630
Website: http://www.cmtint.org
Coalition for Heritable Disorders of Connective Tissue (CHDCT)
382 Main Street
Port Washington, NY 11050
Phone: (516) 883-8712
Website: http://www.chdct.org
Colon Cancer Alliance
175 Ninth Ave
New York, NY 10011
Phone: (212) 627-7451
Website: http://ccalliance.org
Colorectal Cancer Network
PO Box 182
Kensington, MD 20895-0182
Phone: (301) 879-1500
Website: http://www.colorectalcancer.net
Columbia Presbyterian Medical Center
Dept. of Neurological Surgery,
710 West 168 Street
New York, NY 10032
Phone: (212) 305-0378
Fax: (212) 305-3629
Website: http://cpmcnet.columbia.edu/dept/nsg/PNS/Hydrocephalus.html
The Compassionate Friends
P. O. Box 3696
Oak Brook, IL 60522-3696
Phone: (877) 969-0010
Email: nationaloffice@compassionatefriends.org
Website: http://compassionatefriends.org
Congenital Heart Anomalies Support, Education, and Resources
2112 North Wilkins Road
Swanton, OH 43558
Phone: (419) 825-5575
Website: http://www.csun.edu/~hfmth006/chaser
Congenital Heart Disease Information and Resources
1561 Clark Dr.
Yardley, PA 19067
Website: http://www.tchin.org
Congenital Heart Information Network (C.H.I.N.)
1561 Clark Drive
Yardley, PA 19067
Phone: (215) 493-3068
Email: mb@tchin.org
Website: http://tchin.org
Conjoined Twins International
PO Box 10895
Prescott, AZ 86304-0895
Cooley's Anemia Foundation, Inc.
129-09 26th Ave. #203
Flushing, NY 11354
Phone: (800) 522-7222 or (718) 321-2873
Website: http://www.thalassemia.org
Cornelia de Lange Syndrome Foundation, Inc.
302 West Main Street, Suite 100
Avon, CT 06001
Phone: (860) 676-8166, (800) 223-8355
Fax: (860) 676-8337
Corporation for Menkes Disease
5720 Buckfield Court
Fort Wayne, IN 46814
Phone: (219) 436-0137
Council of Regional Networks for Genetic Services
Genetic Services Program, Wadsworth
Center Labs & Research
PO Box 509, Room E299, Empire State Plaza
Albany, NY 12201-0509
Phone: (518) 474-7148
Website: http://www.cc.emory.edu/PEDIATRICS/corn/corn.htm
Craniosynostosis and Parents Support (CAPS)
2965-A Quarters
Quantico, VA 22134
Phone: (877) 686-CAPS or (703) 445-1078
Website: http://www.caps2000.org/
Creutzfeldt-Jakob Disease Foundation, Inc.
PO Box 611625
Miami, FL 33261-1625
Fax: (954) 436-7591
Website: http://www.cjdfoundation.org
Cri du Chat Society
Dept. of Human Genetics, Box 33,
MCV Station,
Richmond VA 23298
Phone: (804) 786-9632
Cri du Chat Syndrome Support Group
Website: http://www.cridchat.unet.com
Crouzon Support Network
PO Box 1272
Edmonds, WA 98020
E-mail: penny@crouzon
Website: http://www.crouzon.org
Crouzon's/Meniere's Parent Support Network
3757 North Catherine Dr.
Prescott Valley, AZ 86314-8320
Phone: (800) 842-4681
E-mail: katy@northlink.com
Cure Autism Now (CAN) Foundation
5455 Wilshire Boulevard Suite 715
Los Angeles, CA 90036-4234
Phone: (500) 888-AUTISM
Fax: (323) 549-0547
Email: info@cureautismnow.org
Website: http://www.cureautismnow.org
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Phone: (301) 951-4422
Website: http://www.cff.org
Cystinosis Foundation
2516 Stockbridge
Dr. Oakland, CA 94611
Phone: (800) 392-8458
Website: http://www.cystinosisfoundation.org
Cystinosis Research Network
8 Sylvester Road
Burlington, MA 01803
Phone: (866) CURE NOW
Fax: (781) 229-6030
Website: http://www.cystinosis.org
D
Dandy-Walker Syndrome Network
5030 142nd Path West
Apple Valley, MN 55124
Phone: (612) 423-4008
DB-LINK, Teaching Research
345 N. Monmouth Ave.
Monmouth, OR 97361.
Phone: (800) 438-9376.
Website: http://www.tr.wou.edu/dblink/about.htm
Deafness Research Foundation
8201 Greensboro Drive, Suite 300
McLean, VA 22102
Phone: (703) 610-9025, (800) 829-5934
E-mail: info@drf.org
Website: http://www.drf.org
Diabetes Action Research and Education Foundation
426 C Street NE
Washington, DC 20002
Website: http://www.daref.org
Dubowitz Syndrome Nationwide Support Group Network
RR 1 Box 114
Downs, IL 61736
Phone: (309) 724-8407
Dubowitz Syndrome Parent Support
PO Box 173
Wheatland, IN 47597
Phone: (812) 886-0575
Dysautonomia Foundation, Inc.
633 Third Ave., 12th Floor
New York, NY 10017-6706
Phone: (212) 949-6644
Website: http://www.med.nyu.edu/fd/fdcenter.html
Dystonia Medical Research Foundation
One East Wacker Dr., Suite 2430
Chicago, IL 60601
Phone: (312) 755-0198
Website: http://www.dystoniafoundation.org
Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)
40 Rector Street, Suite 1403
New York, NY 10006
Phone: (212) 513-4090
Fax: (212) 513-4099
E-mail: staff.debra@exario.net
Website: http://www.debra.org
Dystrophic Epidermolysis Bullosa Research Association of United Kingdom, (DebRA)
13 Wellington Business Park
Dukes Ride, Crowthorne
Berkshire, RG45 6LS
United Kingdom
Phone: 011-01344 771961
E-mail: admin@debra.uk
Website: http://www.debra.uk
E
EA/TEF Child and Family Support Connection, Inc.
111 West Jackson Boulevard, Suite 1145
Chicago, IL 60604-3502
Phone: (312) 987-9085
Fax: (312) 987-9086
E-mail: eatef2@aol.com
Website: http://www.eatef.org/
EAR (Education and Auditory Research) Foundation
955 Woodland Street
Nashville, TN 37206
Phone: (800) 545-HEAR
Email: info@earfoundation.org
Website: http://www.earfoundation.org
Ectodermal Dyplasia Society
108 Charlton Lane
Cheltenham, GlosGL53 9EA
United Kingdom
Website: http://www.ectodermaldysplasia.org
Ehlers-Danlos Support Group—UK
PO Box 335, Farnham
Surrey, GU10 1XJ
United Kingdom
Phone: 01252 690 940
Website: http://www.atv.ndirect.co.uk
Elhers-Danlos National Foundation
6399 Wilshire Boulevard, Suite 203
Los Angeles, CA 90048
Phone: (323) 651-3038
Fax: (323) 651-1366
Website: http://www.ednf.org
Ellis-Van Creveld Foundation
Farthingdale Farm, Hackmans Lane,
Purleigh
Chelmsford, CM3 6RW
United Kingdom
Phone: 01-621-829675
Website: http://www.cafamily.uk/Direct/e24.html
Endocrine Society
8401 Connecticut Ave., Suite 900
Chevv Chase, MD 20815
Phone: (888) 363-6274, (301) 941-0200
Fax: (301) 941-0259
Email:societyservices@endo-society.org
Website:http://www.endo-society.org
Epilepsy Foundation of America
4351 Garden City Dr., Suite 406
Landover, MD 20785-2267
Phone: (301) 459-3700 or (800) 332-1000
Website: http://www.epilepsyfoundation.org
European Chromosome 11q Network
Website: http://www.11q.org
European Long QT Syndrome Information Center
Ronnerweg 2
Nidau, 2560
Switzerland
Phone: 04(132) 331-5835
E-mail: jmettler@bielnews.ch
Website: http://www.bielnews.ch/cyberhouse/qt/qt.html
Eye Bank Association of America
1015 18th Street NW, Suite 1010
Washington, DC 20036
Phone: (202) 775-4999
Website: http://www.restoresight.org/
Eye Cancer Network
115 East 61st Street
New York, NY 10021
Phone: (212) 832-8170
Website: http://www.eyecancer.com
F
Fabry Support and Information Group
PO Box 510, 108 NE 2nd Street, Suite C
Concordia, MO 64020
Phone: (660) 463-1355
Website: http://www.cpgnet.com/fsig.nsf
FACES. The National Craniofacial Assocation
PO Box 11082
Chattanooga, TN 37401
Phone: (423) 266-1632 or (800) 332-2373
E-mail: faces@faces-cranio.org
Website: http://www.faces-cranio.org/
FacioScapuloHumeral Society, Inc.
3 Westwood Road
Lexington, MA 02420
Phone: (781) 860-0501
E-mail: carol.perez@fshsociety.org
Website: http://www.fshsociety.org
Factor V Leiden
Website: http://www.fvleiden.org
Families of Adults Afflicted with Asperger's Syndrome (FAAAS)
Physical address:
1047 Falmouth Road
Hyannis, MA 02601
Mailing address:
PO Box 514
Centerville, MA 02632
Phone: (508) 790-1930
Fax: (508) 790-1930
Email: faaas@faaas.org
Website: http://www.faaas.org
Families with Moyamoya Support Network
4900 McGowen Street SE
Cedar Rapids, IA 54203
Family Village
University of Wisconsin-Madison,
Waisman Center
1500 Highland Ave.
Madison, WI 53705-2280
E-mail: familyvillage@waisman.wisc.edu
Website: http://www.familyvillage.wisc.edu/index.html
Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401-4030
Phone: (800) 828-4891
Website: http://www.fanconi.org
Fatty Oxidation Disorders (FOD) Family Support Group
Deb Lee Gould, MEd, Director, FOD
Family Support Group, MCAD Parent and Grief Consultant
805 Montrose Dr.
Greensboro, NC 24710
Phone: (336) 547-8682
Website: http://www.fodsupport.org
Fetal Alcohol Syndrome Family Resource Institute
PO Box 2525
Lynnwood, WA 98036
Phone: (253) 531-2878 or (800) 999-3429
Website: http://www.fetalalcoholsyndrome.org
Focus Families
2453 Emerald Street
San Diego, CA 92109
Phone: (866) FOCUS50
Email: Support@focusfamilies.org
Website: http://www.focusfamilies.org
Food and Drug Administration
Department of Health and Human Services
5600 Fishers Lane
Rockville, MD 20857
Phone: (888) 463-6332
Website: http://www.fda.gov
Footsteps Institute for Rare Diseases
624 Martin Luther King Way
Tacoma, WA 98405
Phone: (253) 383-0985 or (888) 640-4673
E-mail: rwrfsi@aol.com
Forbes Norris ALS Research Center
Caifornia Pacific Medical Center
2324 Sacramento Street
San Francisco, CA 94115
Phone: (415) 923-3604
Fax: (415) 673-5184
Forward Face, Inc.
317 East 34th Street, Room 901
New York, NY 10016
Phone: (212) 684-5860 or (800) 393-3223
Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mills, MD 21117-2220
Phone: (888) 394-3937 (toll free), (410)
568-0150 (local)
TDD: (800) 683-5555 (toll free), (410)
363-7139 (local)
Email: info@blindness.org
Website: http://www.blindness.org
The Foundation Fighting Blindness—Canada
60 St. Clair Ave., East Suite 703
Toronto, ON, Canada M4T 1N5
Phone: (416) 360-4200
Toll-free phone: (800) 461-3331
Fax: (416) 360-0060
Email: info@ffb.ca
Webssite: http://www.ffb.ca
Foundation for Blood Research
PO Box 190, 69 US Route One
Scarborough, ME 04070-0190
Phone: (207) 883-4131
Fax: (207) 883-1527
Website: http://www.fbr.org
Foundation for Ichthyosis and Related Skin Types
650 N. Cannon Ave., Suite 17
Landsdale, PA 19446
Phone: (215) 631-1411 or (800) 545-3286
Fax: (215) 631-1413
Website: http://www.scalyskin.org
Foundation for Osteoporosis Research and Education
300 27th Street
Oakland, CA 94612
Phone: (888) 266-3015
Website: http://www.fore.org
Fragile X Research Foundation (FRAXA)
45 Pleasant Street
Newburyport, MA 01950
Phone: (978) 462 1866
Fax: (978) 463-9985
Email: info@fraxa.org
Website: http://www.fraxa.org
Freeman-Sheldon Parent Support Group
509 East Northmont Way
Salt Lake City, UT 84103-3324
Phone: (801) 364-7060
Friedreich's Ataxia Research Alliance
2001 Jefferson Davis Highway #209
Arlington, VA 22202
Phone: (703) 413-4468
Website: http://www.frda.org
G
Gene Clinics
9725, Third Avenue, NE, Suite 602
Seattle, WA 98115
Phone: (206) 221 2943
Website: http://www.geneclinics.org
GeneTests
9725 Third Avenue NE, Suite 602
Seattle, WA 98115
Phone: (206) 616-4033
Fax: (206) 221-4679
Email: genetests@genetests.org
Website: http://www.genetests.org/
Genetic Alliance, Inc.
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008-2369
Phone: (202) 966-5557
Fax: (202) 966-8553
Email: info@geneticalliance.org
Website: http://www.geneticalliance.org
Glanzmann's Thrombasthenia Support Group
28 Duke Road, Newton
Hyde, SK14 4JB
United Kingdom
Phone: 0161-368-0219
Glaucoma Foundation
80 Maiden Lane, Suite 1206
New York, NY 10038
Phone: (212) 285-0080
Fax: (212) 651-1888
Email: info@glaucomafoundation.org
Website: http://www.glaucomafoundation.org
Glaucoma Research Foundation
490 Post Street, Suite 1427
San Francisco, CA 94102
Phone: (800) 826-6693, (415) 986-3162
Fax: (415) 986-3763
Email: info@glaucoma.org
Website: http://www.glaucoma.org
Global Initiative for Asthma (GINA)
Phone: (207) 594-5008
Fax: (207) 594-8802
Email: http://www.ginasthma.com/Contact.asp?l1=8&l2=0
Website: http://www.ginasthma.com
Goldenhar Parent Support Network
Attn: Kayci Rush
3619 Chicago Ave.
Minneapolis, MN 55407-2603
Phone: (612) 823-3529
Goldenar Syndrome Research & Information Fund
PO Box 61643
St. Petersburg, FL 3371
Phone: (813) 522-5772
Website: http://www.goldenhar.com
Goldenhar Syndrome Support Network
9325 163 Street
Edmonton, ALB T5R 2P4, Canada
Email: support@goldenharsyndrome.org
Website: http://www.goldenharsyndrome.org
Greenberg Center for Skeletal Dysplasias
600 North Wolfe Street, Block 1012C
Baltimore, MD 21287-4922
Phone: (410) 614-0977
Website: http://www.med.jhu.edu/Greenberg.Center/Greenbrg.htm
Guardians of Hydrocephalus Research Foundation
2618 Avenue Z
Brooklyn, NY 11235-2023
Phone: (718) 743-4473 or (800) 458-865
Fax: (718) 743-1171
E-mail: guardians1@juno.com
H
Haemophelia Society—Von Willebrand Support Services
Chesterfield House, 385 Euston Road
London, NW1 3AU
United Kingdom
Phone: 0171 380 0600
Fax: 0171 387 8220
E-mail: melissa@haemophilia-soc.demon.co.uk
Website: http://www.haemophilia-soc.demon.co.uk/vwd%20services1.html
Headlines: the Craniofacial Support Group
Website: http://www.headlines.uk
Helen Keller National Center for Deaf-Blind Youths and Adults
111 Middle Neck Road
Sands Point, NY 11050
Phone: (516) 944-8900
Website: http://www.helenkeller.org/national/index.htm
Hemochromatosis Foundation, Inc.
PO Box 8569
Albany, NY 12208-0569
Phone: (518) 489-0972
E-mail: s.kleiner@shiva.hunter.cuny.edu.
Website: http://www.hemochromatosis.org
Hereditary Angioedema Association
PO Box 492
Live Oak, FL 32064
Website: http://www.hereditaryangioedema.com
Hereditary Colon Cancer Association (HCCA)
3601 N 4th Ave., Suite 201
Sioux Falls, SD 57104
Phone: (800) 264-6783
Website: http://hereditarycc.org
Hermansky-Pudlak Syndrome Network
39 Riveria Court
Malverne, NY 11565-1602
Phone: (800) 789-9477 or (516) 599-2077
Website: http://www.medhelp.org/web/hpsn.htm
Hermaphrodite Education and Listening Post
PO Box 26292
Jacksonville, NY 32226
E-mail: help@jaxnet.com
Website: http://users.southeast.net/~help/
Human BSE Foundation (United Kingdom)
Phone: 0191 389 4157
E-mail: humanbse.foundation@virgin.net
Human Growth Foundation
997 Glen Cove Ave., Suite 5
Glen Head, NY 11545
Phone: (800) 451-6434
Fax: (516) 671-4055
Email: hgf1@hgfound.org
Website: http://www.hgfound.org
Hunter's Hope Foundation
PO Box 643
Orchard Park, NY 14127
Phone: (877) 984-HOPE
Fax: (716) 667-1212
Website: http://www.huntershope.org
Hydrocephalus Association
870 Market Street Suite 705
San Francisco, CA 94102
Phone: (415) 732-7040 or (888) 598-3789
Fax: (415) 732-7044.
E-mail: hydroassoc@aol.com
Website: http://www.hydroassoc.org
Hydrocephalus Foundation, Inc. (HyFI)
910 Rear Broadway
Saugus, MA 01906
Phone: (781) 942-1161
E-mail: HyFI1@netscape.net
Website: http://www.hydrocephalus.org
Hydrocephalus Support Group, Inc.
PO Box 4236
Chesterfield, MO 63006-4236
Phone: (314) 532-8228
E-mail: hydrobuff@postnet.com
Hypospadias Association of America
4950 S. Yosemite Street, Box F2-156
Greenwood Village, CO 80111
E-mail: hypospadiasassn@yahoo.com
Website: http://www.hypospadias.net
I
Immune Deficiency Foundation
40 W. Chesapeake Ave., Suite 308
Towson, MD 21204
Phone: (800) 296-4433
Fax: (410) 321-9165
Website: http://www.primaryimmune.org
IMPACC (Intestinal Multiple Polyposis and Colorectal Cancer)
PO Box 11
Conyngham, PA 18219
Phone: (570) 788-1818
Inherited High Cholesterol Foundation
University of Utah School of Medicine,
410 Chipeta Way, Room 167
Salt Lake City, UT 84104
Phone: (888) 244-2465
International Albinism Center
University of Minnesota
PO Box 420, Delaware Street SE
Minneapolis, MN 55455
Website: http://www.cbc.umn.edu/iac
International Center for Fabry Disease
Department of Human Genetics
Box 1497, Fifth Ave. at 100th Street
New York, NY 10029
Phone: (866) 322-7963
Website: http://www.mssm.edu/genetics/fabry
International Center for Skeletal Dysplasia
Saint Joseph's Hospital, 7620 York Road
Towson, MD 21204
Phone: (410) 337-1250
International Cohen Syndrome Support Group
7 Woods Court, Brackley
Northants, NN13-6HP
United Kingdom
Phone: (012) 80–704515
International Colour Vision Society: Forschungsstelle fuer Experimentelle Ophthalmologie
Roentgenweg 11
Tuebingen, D-72076
Germany
Website: http://orlab.optom.unsw.edu.au/ICVS
International Essential Tremor Foundation
P.O.Box 14005
Lenexa, Kansas 66285-4005
Phone: (888) 387 3667
Email: staff@essentialtremor.org
Website: http://www.essentialtremor.org
International Joseph Disease Foundation, Inc.
PO Box 2550
Livermore, CA 94551-2550
Phone: (925) 461-7550
Fax: (925) 371-1288
Website: http://www.ijdf.net
International Lesch-Nyhan Disease Association
114 Winchester Way
Shamong, NJ 08088-9398
Phone: (215) 677-4206
International Myopia Prevention Association
RD No. 5, Box 171
Ligonier, PA 15658
Phone: (412) 238-2101
International Patient Advocacy Association
800 Bellevue Way NE, Suite 400
Bellevue, WA 98004
Phone: (800) 944-7823 or (425) 462-4037
Fax: (425) 462-9532
E-mail: lvp.ipaa@att.net
Website: http://www.vanpelt-ipaa.com
International Peutz-Jeghers Support Group
Johns Hopkins Hospital
600 North Wolfe Street, Blalock 1008
Baltimore, MD 21287-4922
International Prader-Willi Syndrome Organization
Bizio 1, 36023 Costozza
Vicenza, Italy
Phone: +39 0444 555557
Fax: +39 0444 555557
Website: http://www.ipwso.org
International Progeria Registry
IBR Department of Human Genetics
1050 Forest Hill Road
Staten Island, NY 10314
Phone: (718) 494-5333
E-mail: wtbibr@aol.com
International Registry of Werner Syndrome
University of Washington
Department of Pathology
Health Science Bldg K543, Box 357470
Seattle, WA 98195
Phone: (206) 543-5088
Website: http://www.pathology.washington.edu/werner/registry/frame2.html
International Rett Syndrome Association
9121 Piscataway Road
Clinton, MD 20735
Phone: (800) 818-RETT
Website: http://www.rettsyndrome.org
International Skeletal Dysplasia Registry
Medical Genetics Institute
8700 Beverly Blvd., West Tower, Suite 665
Los Angeles, CA 90048
Phone: (800) 233-2771
Email: https://www.csmc.edu/contact_us/contact_us.asp
Website: http://www.csmc.edu/3805.html
International Society for Mannosidosis and Related Diseases
1030 Saxon Hill Drive
Cockeysvill, MD 21030
Phone: (410) 628-9991
E-mail: info@mannosidosis.org
Website: http://www.mannosidosis.org
Intersex Society of North America
979 Golf Course Drive #282
Rohnert Park CA 94928
Email: http://www.isna.org/contact/email
Website: http://www.isna.org
Irish Raynaud's and Scleroderma Society
PO Box 2958 Foxrock
Dublin 18
Ireland
Phone: (01) 235 0900
E-mail: irss@indigo.ie
Iron Disorders Institute, Inc.
PO Box 3021
Greenville, SC 29602
Phone: (864) 241-0111
E-mail: irondis@aol.com
Website: http://www.irondisorders.org
Iron Overload Diseases Association, Inc.
433 Westwind Dr.
North Palm Beach, FL 33408
Phone: (561) 840-8512
E-mail: iod@ironoverload.org
Website: http://www.ironoverload.org
Ivemark Syndrome Association
52 Keward Ave., Wells
Somerset, BAS-1TS
United Kingdom
Phone: 1-(74)967-2603
J
JNCL Research Fund
PO Box 766
Mundelein, IL 60060
Website: http://www.jnclresearch.org
Joubert Syndrome Foundation Corporation
Attn: Stephanie Frazer
384 Devon Drive
Mandeville, LA 70448
Juvenile Diabetes Foundation International (JDF)
120 Wall Street
New York, NY 10005
Phone: (212) 785-9500 x708 or (800) 533-2873
Website: http://www.jdf.org
K
Kabuki Syndrome Network
168 Newshaw Lane, Hadfield
Glossop, SK13 2AY
United Kingdom
Phone: 01457 860110
Website: http://www.ksn-support.uk
Kidney and Urology Foundation of America, Inc.
1250 Broadway, Suite 2001
New York, NY 10001
Phone: (212) 629-9770, (800) 633-6628
Fax: (212) 629-5652
Email: info@kidneyurology.org
Website: http://www.kidneyurology.org/homepage.htm
KidsHealth. Nemours Center for Children's Health Media
PO Box 269
Wilmington, DE 19899
Website: http://www.kidshealth.org
Kids with Heart
1578 Careful Dr.
Green Bay, WI 54304
Phone: (800) 538-5390
Website: http://www.execpc.com/~kdswhrt
Klinefelter Syndrome and Associates, Inc.
PO Box 119
Roseville, CA 95678-0119
Phone: (916) 773-2999 or (888) 999-9428
Fax: (916) 773-1449
E-mail: ksinfo@genetic
Website: http://www.genetic.org/ks
Klinefelter's Organization
PO Box 60
Orpington, BR68ZQ
United Kingdom
Website: http://hometown.aol.com/KSCUK/index.htm
Klippel-Trenaunay Support Group
5404 Dundee Road
Edina, MN 55436
Phone: (612) 925-2596
L
Lactic Acidosis Support Trust
1A Whitley Close, Middlewich
Cheshire, CW10 0NQ
United Kingdom
Phone: (016) 068-37198
Langer-Giedion Syndrome Association
89 Ingham Ave.
Toronto, ON M4K 2W8 Canada
Phone: (416) 465-3029
Email: kinross@istar.ca
Laurent Clerc National Deaf Education Center
Gallaudet University
800 Florida Ave. NE
Washington, DC 20002
Website: http://clerccenter.gallaudet.edu
League for the Hard of Hearing
50 Broadway, 6th Floor
New York, NY 10004
Phone: (917) 305-7700
Fax: (917) 305-7888
TTY: (917) 305-7999
Website: http://www.lhh.org/index.htm
Lesch-Nyhan Syndrome Registry
New York University School of Medicine
Department of Psychiatry
550 First Ave.
New York, NY 10012
Phone: (212) 263-6458
Let's Face It (USA)
PO Box 29972
Bellingham, WA 98228-1972
Phone: (360) 676-7325
E-mail: letsfaceit@faceit.org
Website: http://www.faceit.org/letsfaceit
Leukemia Research Fund
43 Great Ormond St
London, WC1N 3JJ
England
Phone: 020-7405-3139
Website: http://dspace.dial.pipex.com/lrf
Leukemia & Lymphoma Society
1311 Mamaroneck Ave.
White Plains, NY 10605
Phone: (914) 949-5213
Website:http://www.leukemialymphoma.org
Lissencephaly Network, Inc.
716 Autumn Ridge Lane
Fort Wayne, IN 46804-6402
Phone: (219) 432-4310
Fax: (219) 432-4310
E-mail: lissennet@lissencephaly.org
Website: http://www.lissencephaly.org
Little People of America, Inc.
National Headquarters
5289 NE Elam Young Parkway, Suite F-100
Hillsboro, OR 97124
Phone: (888) LPA-2001, (503) 846-1562
Fax: (503) 846-1590
Email: info@lpaonline.org
Website: http://www.lpaonline.org
Little People of America National Headquarters
Box 745
Lubbock, TX 79408
Phone: (888) LPA-2001
Email: LPADataBase@juno.com
Little People's Research Fund, Inc.
80 Sister Pierre Dr.
Towson, MD 21204-7534
Phone: (410) 494-0055 or (800) 232-5773
Fax: (410) 494-0062
Website: http://pixelscapes.com/lprf
Lowe Syndrome Association
222 Lincoln Street
West Lafayette, IN 47906-2732
Phone: (765) 743-3634
Website: http://www.lowesyndrome.org
M
Macular Degeneration Foundation
PO Box 9752
San Jose, CA 95157
Phone: (888) 633-3937
Website: http://www.eyesight.org
MAGIC Foundation for Children's Growth
6645 West North Avenue
Oak Park, IL 60302
Phone: (708) 383-0808 or (800) 362-4423
Fax: (708) 383-0899
Email: mary@magicfoundation.org
Website:http://www.magicfoundation.org
Malignant Hyperthermia Association of the United States
PO Box 1069, 39 East State Street
Sherburne, NY 13460
Phone: (800) 98-MHAUS
Website: http://www.mhaus.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
Phone: (888) 663-4637
Email: resourcecenter@modimes.org
Website: http://www.modimes.org
McKusick Nathans Institute of Genetic Medicine
Johns Hopkins University
600 North Wolfe Street, Blalock 1008
Baltimore, MD 21287-4922
Phone: (410) 955-3071
Meckel-Gruber Syndrome Foundation
Website: http://www.meckelgruber.org
Metabolic Information Network
PO Box 670847
Dallas, TX 75367-0847
Phone: (214) 696-2188 or (800) 945-2188
MHE and Me—A Support Group for Kids with Multiple Hereditary Exostoses
14 Stony Brook Dr.
Pine Island, NY 10969
Phone: (914) 258-6058
Website: http://www.geocities.com/mheandme
MJD Family Network Newsletter
c/o Mike and Phyllis Cote
591 Federal Furnace Road
Plymouth, MA 02360-4761
Moebius Syndrome Foundation (MSF)
P.O. Box 147
Pilot Grove, MO 65276
Phone: (660) 834-3406
Website: http://www.ciaccess.com/moebius
Mucolipidosis IV Foundation
719 East 17th Street
Brooklyn, NY 11230
Phone: (718) 434-5067
Website: http://www.ML4.org
Multiple Hereditary Exostoses Coalition
8838 Holly Lane
Olmstead Falls, OH 44138
Phone: (440) 235-6325
Website: http://www.radix.net/~hogue/mhe.htm
Multiple Hereditary Exostoses Family Support Group
5316 Winter Moss Court
Columbia, MD 21045
Phone: (410) 922-5898
Website: http://www.radix.net/~hogue/mhe.htm
Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, NJ 08002
Phone: (800) 532-7667, (856) 488-4500
Fax: (856) 661-9797
Email: webmaster@msaa.com
Website: http://www.msaa.com
Multiple Sclerosis Foundation
6350 North Andrews Avenue
Ft. Lauderdale, FL 33309-2130
Phone: (954) 776-6805, (888) MSFOCUS
(673-6287)
Email: admin@msfocus.org, support@msfocus.org
Website: http://www.msfocus.org
Multiple Sclerosis International Federation
3rd Floor Skyline House, 200 Union Street
London SE1 0LX.
Phone: +44 (0) 20 7620 1911
Website: http://www.msif.org
MUMS. National Parent to Parent Organization
150 Custer Court
Green Bay, WI 54301-1243
Phone: (920) 336-5333
Website: http://www.netnet.net/mums
Muscular Dystrophy Association
3300 East Sunrise Dr.
Tucson, AZ 85718
Phone: (800) 572-1717
Email: mda@mdausa.org
Website: http://www.mdausa.org
Muscular Dystrophy Campaign
7-11 Prescott Place
London, SW4 6BS, England
Phone: 020 7720 8055
Fax: 020 7498 0670
Email: info@muscular-dystrophy.org
Website: http://www.musculardystrophy.org
Muscular Dystrophy Association Canada
2345 Yonge Street, Suite 900
Toronto, ON M4P 2E5, Canada
Phone: 1 (866) MUSCLE-8
Fax: (416) 488-7523
Email: info@muscle.ca
Website: http://www.mdac.ca
Muscular Dystrophy Family Foundation
2330 North Meridian Street
Indianapolis, IN 46208-5730
Phone: (800) 544-1213, (317) 923-MDFF
Fax: (317) 923-6334
Email: http://www.mdff.org/contact.asp
Website: http://www.mdff.org
Myasthenia Gravis Foundation of America
5841 Cedar Lake Road, Suite 204
Minneapolis, MN 55416
Phone: (800) 541-5454
Fax: (952) 545-6073
Myopia International Research Foundation
1265 Broadway, Room 608
New York, NY 10001
Phone: (212) 684-2777
Myotubular Myopathy Resource Group
2602 Quaker Drive
Texas City, TX 77590
Phone: (409) 945 8569
Email: info@mtmrg.org
Website: http://www.mtmrg.org
N
Narcolepsy Network
PO Box 42460
Cincinnati, OH 45242
Phone: (973) 276-0115
National Adrenal Diseases Foundation
505 Northern Boulevard
Great Neck, NY 11021
Phone: (516) 487-4992
Email: nadfmail@aol.com
Website: http://www.medhelp.org/nadf
National Alliance for Autism Research (NAAR)
414 Wall Street Research Park
Princeton, NJ 08540
Phone: (609) 430-9160, (888) 777-6227, (310) 230-3568
Fax: (609) 430-9163
Website: http://www.naar.org
National Alliance for the Mentally Ill
Colonial Place Three, 2107 Wilson
Boulevard, Suite 300
Arlington, VA 22201-3042
Phone: (703) 524-7600
HelpLine: (800) 950-NAMI
Fax: (703) 524-9094
TDD: (703) 516-7227
Website: http://www.nami.org/
National Alopecia Areata Foundation (NAAF)
PO Box 150760
San Rafael, CA 94915-0760
Phone: (415) 456-4644
National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
One AMS Circle
Bethesda, MD 20892-3675
Phone: (301) 495-4484
National Association for Parents of Children with Visual Impairments (NAPVI)
PO Box 317
Watertown, MA 02471
Phone: (617) 972-7441, (800) 562-6265
Fax: (617) 972-7444
Email: napvi@perkins.org
Website: http://www.spedex.com/napvi
National Association for Visually Handicapped
22 West 21st Street
New York, NY 10010
Phone: (212) 889-3141
Website: http://www.navh.org
National Association of the Deaf
814 Thayer, Suite 250
Silver Spring, MD 20910-4500
Phone: (301) 587-1788
E-mail: nadinfo@nad.org
Website: http://www.nad.org
National Asthma Education and Prevention Program (NAEPP)
School Asthma Education Subcommittee
Website: http://www.nih.gov/health/asthma/index.htm
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447
Phone: (763) 553-0020
Fax: (763) 553-0167
E-mail: naf@ataxia.org
Website: http://www.ataxia.org
National Attention Deficit Disorder Association
P.O. Box 543
Pottstown, PA 19464
Phone: (484) 945-2101
Email: http://www.add.org/contact/index.html
Website: http://www.add.org
National Birth Defects Prevention Network
Atlanta, GA
Phone: (770) 488-3550
Website: http://www.nbdpn.org
National Cancer Institute
Office of Communications
31 Center Dr. MSC 2580, Bldg. 1
Room 10A16
Bethesda, MD 20892-2580
Phone: (800) 422-6237
Website: http://www.nci.nih.gov
National Center for Biotechnology Information
National Library of Medicine
Building 38A, Room 8N805
Bethesda, MD 20894
Phone: (301) 496-2475
Website: http://www3.ncbi.nlm.nih.gov
National Center for Environmental Health
Centers for Disease Control and Prevention
Mail Stop F-29, 4770 Buford Highway NE
Atlanta, GA 30341-3724
Website: http://www.cdc.gov/nceh/asthma/default.htm
National Center for Health Statistics
Division of Data Services
6525 Belcrest Road
Hyattsville, MD 20782-2003
Website: http://www.cdc.gov/nchs
National Center on Sleep Disorders Research
Two Rockledge Centre, 6701 Rockledge Dr.
Bethesda, MD 20892
Phone: (301) 435-0199
National Cholesterol Education Program
National Heart, Lung and Blood Institute
PO Box 30105
Bethesda, MD 20824
Phone: (301) 592-8573
Website: http://www.nhlbi.nih.gov
National Clearinghouse for Alcohol and Drug Information
PO Box 2345
Rockville, MD 20847
Phone: (800) 729-6686
National Council on Alcoholism and Drug Dependence Hopeline
12 West 21st Street
New York, NY 10010
Phone: (800) 622-2255
National Depressive and Manic Depressive Association
730 N. Franklin, Suite 501
Chicago, IL 60610-7204
Phone: (800) 826-3632 or (312) 642-7243
Website: http://www.ndmda.org
National Diabetes Education Program
CDC Division of Diabetes Translation
PO Box 8728
Silver Spring MD 20910
Phone: 1-877-CDC-DIAB (877-232-3422)
Fax: (301) 562-1050
EMail: diabetes@cdc.gov
Website: http://www.cdc.gov/diabetes/ndep/index.htm
National Diabetes Information Clearinghouse
1 Information Way
Bethesda, MD 20892-3560
Phone: (800) 860-8747
Website: http://diabetes.niddk.nih.gov/about/index.htm
National Down Syndrome Congress
7000 Peachtree-Dunwoody Road, Bldg
5, Suite 100
Atlanta, GA 30328-1662
Phone: (770) 604-9500 or (800) 232-6372
Fax: (770) 604-9898
E-mail: ndsccenter@aol.com
Website: http://www.ndsccenter.org
National Down Syndrome Society
666 Broadway
New York, NY 10012-2317
Phone: (212) 460-9330 or (800) 221-4602
Fax: (212) 979-2873
Website: http://www.ndss.orginfo@ndss.org
National Easter Seal Society
230 W. Monroe Street, Suite 1800
Chicago, IL 60606-4802
Phone: (312) 726-6200 or (800) 221-6827
Website: http://www.easter-seals.org
National Epidermolysis Bullosa Registry
University of North Carolina at Chapel Hill
Bolin Heights Bldg. #1, CB# 3369
Chapel Hill, NC 27514-3369
Phone: (919) 966-2007
Fax: (919) 966-7080
E-mail: eb_registry@med.unc.edu
Website: http://www.med.unc.edu/derm/nebr_site
National Eye Institute
National Institutes of Health
31 Center Dr., Bldg. 31, Room6A32,
MSC 2510
Bethseda, MD 20892-2510
Phone: (301) 496-5248
E-mail: 2020@nei.nih.gov
Website: http://www.nei.nih.gov
National Familial Pancreas Tumor Registry
Johns Hopkins Hospital
Weinberg Building, Room 2242
401 North Broadway
Baltimore, MD 21231-2410
Phone: (410) 955-9132
Website: http://www.path.jhu.edu/pancreas
National Federation for the Blind
1800 Johnson Street
Baltimore, MD 21230
Phone: (410) 659-9314
E-mail: epc@roundley.com
Website: http://www.nfb.org
National Foundation for Depressive Illness, Inc.
PO Box 2257
New York, NY 10016
Phone: (212) 268-4260 or (800) 239-1265
Website: http://www.depression.org
National Foundation for Ectodermal Dysplasias
PO Box 114, 410 E Main
Mascoutah, IL 62258-0114
Phone: (618) 566-2020
Fax: (618) 566-4718
Email: info@nfed.org
Website: http://www.nfed.org
National Foundation for Facial Reconstruction
317 East 34th Street #901
New York, NY 10016
Phone: (800) 422-3223
Website: http://www.nffr.org
National Foundation for Jewish Genetic Diseases, Inc.
250 Park Ave., Suite 1000
New York, NY 10017
Phone: (212) 371-1030
Website: http://www.nfjgd.org
National Foundation for the Blind
1800 Johnson Street
Baltimore, MD 21230
Phone: (410) 659-9314
Website: http://www.nfb.org
National Fragile X Foundation
PO Box 190488
San Francisco, CA 94119-0988
Phone: (800) 688-8765 or (510) 763-6030
Fax: (510) 763-6223
E-mail: natlfx@sprintmail.com
Website: http://nfxf.org
National Fragile X Syndrome Support Group
206 Sherman Road
Glenview, IL 60025
Phone: (708) 724-8626
National Gaucher Foundation
11140 Rockville Pike, Suite 350
Rockville, MD 20852-3106
Phone: (800) 925-8885
Website: http://www.gaucherdisease.org
National Heart, Lung and Blood Institute
Division of Lung Diseases
Suite 10122, 6701 Rockledge Dr. MSC 7952
Bethesda, MD 20892-7952
Phone: (301) 435-0233
Website: http://www.nhlbi.nih.gov/index.htm
National Heart, Lung, and Blood Institute
PO Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
TTY: (240) 629 3255
Fax: (240) 629 3246
Email: nhlbiinfo@nhlbi.nih.gov
Website: http://www.nhlbi.nih.gov
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
Phone: (800) 42-HANDI
Website: http://www.info@hemophilia.org
National Human Genome Research Institute
The National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20892
Phone: (301) 496-2433
Website: http://www.nhgri.nih.gov
National Hydrocephalus Foundation
12413 Centralia
Lakewood, CA 90715-1623
Phone: (562) 402-3523 or (888) 260-1789
E-mail: hydrobrat@earthlink.net
Website: http://www.nhfonline.org
National Incontinentia Pigmenti Foundation
30 East 72nd Street
New York, NY 10021
Phone: (212) 452-1231
Fax: (212) 452-1406
Website: http://imgen.bcm.tmc.edu/NIPF
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
One AMS Circle
Bethesda, MD 20892
Phone: (301) 496-8188
Fax: (877) 226-4267
Email: NAMSIC@mail.nih.gov
Website: http://www.nih.gov/niams
National Institute of Child Health and Human Development (NICHD)
Patient Recruitment and Public Liaison Office
Building 61, 10 Cloister Court
Bethesda, MD 20892-4754
Phone: (800) 411-1222
TTY: (301) 594-9774 or (866) 411-1010
E-mail: prpl@mail.cc.nih.gov
Website: http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0141.html
National Institute of Diabetes and Digestive and Kidney Diseases
Building 31, Room 9A04
Bethesda, MD 20892
Website: http://www.niddk.nih.gov
National Institute of Mental Health
6001 Executive Boulevard, Rm. 8184,
MSC 9663
Bethesda, MD 20892-9663
Phone: (301) 443-4513
Fax: (301) 443-4279
Website: http://www.nimh.nih.gov/publicat/index.cfm
National Institute of Neurological Disorders and Stroke
31 Center Drive, MSC 2540, Bldg. 31,
Room 8806
Bethesda, MD 20814
Phone: (301) 496-5751 or (800) 352-9424
Website: http://www.ninds.nih.gov
National Institute on Aging Information Center
PO Box 8057
Gaithersburg, MD 20898
Phone: (800) 222-2225 or (301) 496-1752
National Institute on Alcohol Abuse and Alcoholism
5600 Fishers Lane
Rockville, MD 20852
National Institute on Deafness and Other Communication Disorders
31 Center Dr., MSC 2320
Bethesda, MD 20814
Phone: (301) 402-0900
E-mail: nidcdinfo@nidcd.nih.gov
Website: http://www.nidcd.nih.gov
National Institutes of Health (NIH)
PO Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424
Website: http://www.ninds.nih.gov/health
National Institutes of Health, Office of Rare Diseases
31 Center Dr., Bldg. 31, Room 1B-19,
MSC 2084
Bethesda, MD 20892-2084
Phone: (301) 402-4336
Fax: (301) 480-9655
E-mail: hh70f@nih.gov
Website: http://rarediseases.info.nih.gov/ord
National Institutes of Health, Osteoporosis and Related Bone Diseases
National Resource Center
1232 22nd Street NW
Washington, DC 20037-1292
Phone:Fax: (202) 223-0344
Website: http://www.osteo.org/hypoph.html
National Kidney and Urologic Disases Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3560
Phone: (800) 891-5390
Email: nkudic@info.niddk.nih.gov.
Website: http://kidney.niddk.nih.gov/about/index.htm
National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Phone: (800) 622-9010
Website: http://www.kidney.org
National Marfan Foundation
382 Main Street
Port Washington, NY 11050-3121
Phone: (800) 862-7326
Website: http://www.marfan.org
National MPS Society
102 Aspen Dr.
Downingtown, PA 19335
Phone: (610) 942-0100
Fax: (610) 942-7188
E-mail: info@mpssociety.org
Website: http://www.mpssociety.org
National Multiple Sclerosis Society
733 Third Avenue 6th Floor
New York, NY 10017-3288
Phone: (800) 344-4867
Website: http://www.nationalmssociety.org
National Newborn Screening and Genetics Resource Center
1912 W. Anderson Lane, Suite 210
Austin, TX 78757
Phone:Fax: (512) 454-6419
Website: http://www.genes-rus.uthscsa.edu
National Organization for Albinism and Hypopigmentation
1530 Locust Street #29
Philadelphia, PA 19102-4415
Phone: (215) 545-2322 or (800) 473-2310
Website: http://www.albinism.org
National Organization for Rare Disorders (NORD)
PO Box 8923
New Fairfield, CT 06812-8923
Phone: (203) 746-6518 or (800) 999-6673
Fax: (203) 746-6481
Website: http://www.rarediseases.org
National Organization of Disorders of the Corpus Callosum
18032-C Lemon Drive
PMB 363
Yorba Linda, CA 92886
Website: http://www.corpuscallosum.org
National Organization of Mothers of Twins Clubs
PO Box 438
Thompson Station, TN 37179
Phone: (615) 595-0936
Website: http://www.nomotc.org
National Organization to Treat A-T
4316 Ramsey Ave.
Austin, TX 78756-3207
Phone: (877) TREAT-AT
Website: http://www.treat-at.org
National Potters Syndrome Support Group (NPSSG)
225 Louisiana Street
Dyess AFB, TX 79607
Phone: (915) 692-0831
Email: Wright01@Camalott.com.
National Registry for Ichthyosis and Related Disorders
University of Washington Dermatology
Department
Box 356524, 1959 N.E. Pacific, Rm. BB1353
Seattle, WA 98195-6524
Phone: (800) 595-1265 or (206) 616-3179
Website: http://www.skinregistry.org
National Retinitis Pigmentosa Foundation
11350 McCormick Road, Executive
Plaza 1, Suite 800
Hung Valley, MD 21031-1014
Phone: (800) 683-5555
Website: http://www.blindness.org
National Retinoblastoma Research and Support Foundation
PO Box 016880, 900 NW 17th Street, Room 257
Miami, FL 33101-6880
Phone: (800) 226-2734
National Sleep Foundation
1367 Connecticut Ave. NW, Suite 200
Washington, DC 20036
Phone: (202) 785-2300.
National Society of Genetic Counselors
233 Canterbury Dr.
Wallingford, PA 19086-6617
Phone: (610) 872-1192
Website: http://www.nsgc.org/GeneticCounselingYou.asp
National Society to Prevent Blindness
500 East Remington Road
Schaumburg, IL 60173
Phone: (708) 843-2020 or (800) 331-2020
Website: http://www.preventblindness.org
National Tay-Sachs and Allied Diseases Association
2001 Beacon Street, Suite 204
Brighton, MA 02135
Phone: (800) 906-8723
Fax: 617-277-0134
E-mail: ntasd-Boston@worldnet.att.net
Website: http://www.ntsad.org
National Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
Bayside, NY 11361-2820
Phone: (718) 224-2999
Fax: (718) 279-9596
E-mail: tourette@ix.netcom.com
National Urea Cycle Disorders Foundation
4841 Hill Street,
La Canada, CA 91001.
Phone: (800) 38-NUCDF.
Website: http://www.NUCDF.org/
Nephrogenic Diabetes Insipidus Foundation
PO Box 1390
Eastsound, WA 98245
Phone: (888) 376-6343
Fax: (888) 376-3842
Website: http://www.Ndi.org
Neuropathy Association
60 E. 42nd Street Suite 942
New York, NY 10165
Phone: (212) 692-0662
Website: http://www.neuropathy.org
Nevus Network, The Congenital Nevus Support Group
PO Box 1981
Woodbridge, VA 22193
Phone: (703) 492-0253
Website: http://www.nevus.org
Nevus Outreach, Inc.
1616 Alpha Street
Lansing, MI 48910
Phone: (517) 487-2306
Website: http://www.nevus.org
Nofas
216 G Street NE
Washington, DC 20002
Phone: (202) 785-4585
Website: http://www.nofas.org
Norrie Disease Association
Massachusetts General Hospital, E
#6217, 149 13th Street
Charlestown, MA 02129
Phone: (617) 726-5718
E-mail: sims@helix.mgh.harvard.edu
O
Oculo-Dento-Digital Dysplasia Support Group
8810 Orchard Road
Pikesville, MD 21208
Phone: (410) 480-0882
Email: jquasneyjr@comcast.net
Website: http://home.comcast.net/~jquasneyjr
Opitz G/BBB Family Network
PO Box 515
Grand Lake, CO 80447
E-mail: opitznet@mac.com
Website: http://www.gle.egsd.k12.co.us/opitz/index.html
Organic Acidemia Association
13210 35th Ave. North
Plymouth, MN 55441
Phone: (763) 559-1797
Fax: (863) 694-0017
Website: http://www.oaanews.org
Organic Acidemias UK
5 Saxon Road, Ashford
Middlesex, TW15 1QL
United Kingdom
Phone: (178)424-5989
P
Pallister-Hall FoundationRFD Box
3000, Fairground Road
Bradford, VT 05033
Pallister-Killian Syndrome Family Support Group
3700 Wyndale Court
Fort Worth, TX 76109
Phone: (817) 927-8854
Fax: (817) 927-2073
Pancreatitis Association International
Phone: (866) 887-7665
Email: karynwms@aol.com
Website: http://www.pancassociation.org
Pancreatitis Patients' Support Group
PO Box 164, Rochdale
Lancashire, OL11 5GY
United Kingdom
Website: http://www.zen.co.uk/home/page/ppsg/
Parent Project for Muscular Dystrophy Research
1012 N. University Boulevard
Middletown, OH 45042
Phone: (413) 424-0696 or (800) 714-5437
E-mail: parentproject@aol.com
Website: http://www.parentdmd.org
Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
76 South New Boston
Francestown, NH 03043
Phone: (603) 547-8384
Website: http://www.smithmagenis.org
Parents of Galactosemic Children, Inc.
1100 West 49th Street
Austin, TX 78756-3199
Phone: (512)458-7111
Website: http://www.tdh.state.tx.us/newborn/galac_1.htm
Pew Environmental Health Commission at the Johns Hopkins School of Public Health
111 Market Place, Suite 850
Baltimore, MD 21202
Phone: (410) 659-2690
Website: http://pewenvirohealth.jhsph.edu
Pierre Robin Network
PO Box 3274
Quincy, IL 62305
Phone: (217) 224-7480
Website: http://www.pierrerobin.org/index.html
PMD Foundation
Contact: Mike Laprocido
Phone: (609) 636-2482
Polycystic Kidney Disease Foundation
4901 Main Street
Kansas City, MO 64112-2634
Phone: (800) PKD-CURE
Website: http://www.pkdcure.org/home.htm
Polycystic Ovarian Syndrome Association
PO Box 80517
Portland, OR 97280
Phone: (877) 775-PCOS
Website: http://www.pcosupport.org
Prader-Willi Foundation
223 Main Street
Port Washington, NY 11050
Phone: (800) 253-7993
Website: http://www.prader-willi.org
Prader-Willi Syndrome Association
5700 Midnight Pass Road, Suite 6
Sarasota, FL 34242-3000
Phone: (941) 312-0400 or (800) 926-4797
Fax: (941) 312-0142
Email: national@pwsausa.org
Website: http://www.pwsausa.org
Prevent Blindness America
500 East Remington Road
Schaumburg, IL 60173
Phone: (800) 331-2020
Website: http://www.preventblindness.org
Proteus Syndrome Foundation
6235 Whetstone Dr.
Colorado Springs, CO 80918
Phone: (719)264-8445
E-mail: abscit@aol.com
Website: http://www.kumc.edu/gec/support/proteus.html
Pull-thru Network
316 Thomas Street
Bessemer, AL 35020
Phone: (205) 428-5953
R
Rainbows Down Under—A Trisomy 18 and Trisomy 13 Resource
SOFT Australia, 198 Oak Road
Kirrawee, NSW 2232
Australia
Phone: 02-9521-6039
Website: http://members.optushome.com.au/karens
Raynaud's & Scleroderma Association (UK)
112 Crewe Road, Alsager
Cheshire, ST7 2JA
United Kingdom
Phone: (44) (0) 1270 872776
E-mail: webmaster@raynauds.demon.co.uk
Website: http://www.raynauds.demon.co.uk
Research Registry for Hereditary Hearing Loss
555 N. 30th Street
Omaha, NE 68131
Phone: (800) 320-1171
Website: http://www.boystown.org/btnrh/deafgene.reg/waardsx.htm
RESOLVE, The National Infertility Association
1310 Broadway
Somerville, MA 02144-1779
Phone: (617) 623-0744
E-mail: resolveinc@aol.com
Website: http://www.resolve.org
Retina International
Ausstellungsstrasse 36
Zürich, CH-8005
Switzerland
Phone: (+41 1 444 10 77)
Website: http://www.retinainternational.org
Retinitis Pigmentosa International
23241 Ventura Boulevard, Suite 117
Woodland Hills, CA 91364
Phone: (818) 992-0500 or (800) 344-4877
E-mail: rpint@pacbell.net
Website: http://www.rpinternational.org
Rett Syndrome Research Foundation
4600 Devitt Dr.
Cincinnati, OH 45246
Website: http://www.rsfr.org
Rhizomelic Chondrodysplasia Punctata (RCP) Family Support Group
137 25th Ave.
Monroe, WI 53566
Robinow Syndrome Foundation
PO Box 1072
Anoka, MN 55303
Phone: (612) 434-1152
Website: http://www.robinow.org
Royal National Institute for the Blind
PO Box 173
Peterborough, PE2 6WS
United Kingdom
Website: http://www.rnib.uk
Rubinstein-Taybi Parent Support Group
Attn: Lorrie Baxter
PO Box 146
Smith Center, KS 66967
Phone: (888) 447-2989
E-mail: lbaxter@ruraltelnet
Website: http://www.specialfriends.org
Russell-Silver syndrome Support Group: Yahoo Groups
Website: http://groups.yahoo.com/group/RSS-Support
S
SADS Foundation
PO Box 58767, 508 East South Temple,
Suite 20
Salt Lake City, UT 84102
Phone: (800) 786-7723
Website: http://www.sads.org
Schepens Eye Research Institute
20 Staniford Street
Boston, MA 02114-2500
Phone: (617) 912-0100
Website: http://www.eri.harvard.edu
Schizophrenics Anonymous
403 Seymour Ave., Suite 202
Lansing, MI, 48933
Phone: (800) 482-9534, (517) 485-7168
Email: inquiries@nsfoundation.org
Website: http://www.nsfoundation.org/sa
Scleroderma Foundation
12 Kent Way, Suite 101
Byfield, MA 01922
Phone: (978) 463-5843 or (800) 722-HOPE
Fax: (978) 463-5809
Website: http://www.scleroderma.org
SHARE—Pregnancy and Infant Loss Support, Inc.
St Joseph Health Center, 300 First Capital Dr.
St. Charles, MO 63301
Phone: (800) 821-6819
Short Stature Foundation
4521 Campus Drive, #310
Irvine, CA 92715
Phone: (714) 559-7131 or (800) 243-9273
Shriners Hospitals for Children
International Shrine Headquarters
2900 Rocky Point Dr.
Tampa, FL 33607-1460
Phone: (813) 281-0300
Skin Cancer Foundation
245 Fifth Ave., Suite 1403
New York, NY 10016
Phone: (800) 754-6490
Email: info@skincancer.org
Website: http://www.skincancer.org
Smith-Lemli-Opitz Advocacy and Exchange (RSH/SLO)
2650 Valley Forge Dr.
Boothwyn, PA 19061
Phone: (610) 485-9663
Website: http://members.aol.com/slo97/index.html
Society for Mucopolysaccharide Diseases
46 Woodside Road, Amersham
Buckinghamshire, HP6 6AJ
United Kingdom
Phone: +44 (01494) 434156
Website: http://www.mpssociety.co.uk
Sotos Syndrome Support Group
Three Danda Square East #235
Wheaton, IL 60187
Phone: (888) 246-SSSA or (708) 682-8815
Website: http://www.well.com/user/sssa/
Spastic Paraplegia Foundation
209 Park Road
Chelmsford, MA 01824
Phone: (703) 495 9261
Website: http://www.sp-foundation.org
Spina Bifida Association of America
4590 MacArthur Boulevard NW, Suite 250
Washington, DC 20007-4226
Phone: (800) 621-3141 or (202) 944-3285
Fax: (202) 944-3295
Website: http://www.sbaa.org
SRPS Family Network (Short Rib Polydactly Syndrome)
Website: http://www.srps.net
Stanford Center for Narcolepsy
1201 Welch Rd-Rm P-112
Stanford, CA 94305
Phone: (415) 725-6517
Stickler Involved People
15 Angelina
Augusta, KS 67010
Phone: (316) 775-2993
Website: http://www.sticklers.org/sip
Sudden Arrhythmia Death Syndrome Foundation
PO Box 58767
508 East South Temple, Suite 20
Salt Lake City, UT 84102
Phone: (800) 786-7723
E-mail: sads@sads.org
Website: http://www.sads.org
Sudden Infant Death Syndrome Network
PO Box 520
Ledyard, CT 06339
Website: http://sids-network.org
Support for Parents with Hypospadias Boys
Website: http://clubs.yahoo.com/clubs/mumswithhypospadiaskids
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
2982 South Union Street
Rochester, NY 14624
Phone: (800) 716-SOFT
Website: http://www.trisomy.org
T
T.A.R.S.A. Thrombocytopenia Abset Radius Syndrome Association
212 Sherwood Dr.
Linwood, NJ 08324-7658
Phone: (609) 927-0418
Task Force on Xeroderma Pigmentosum
American Academy of Dermatology
Box 4014
Schaumburg, IL 60168-4014
Phone: (708) 330-0230
Texas Heart Institute Heart Information Service
PO Box 20345
Houston, TX 77225-0345
Phone: (800) 292-2221
Website: http://www.tmc.edu/thi/his.html
Tourette Syndrome Association, Inc.
42-40 Bell Blvd., Suite 205
Bayside, NY 11361-2820
Phone: (718) 224-2999
Fax: (718) 279-9596
Website: http://www.tsa-usa.org
Tourette Syndrome Foundation of Canada
194 Jarvis Street, #206
Toronto, ON M5B 2B7
Canada
Phone: (800) 361-3120
E-mail: tsfc.org@sympatico.ca
Website: http://www.tourette.ca
Treacher Collins Foundation
Box 683
Norwich, VT 05055
Phone: (800) 823-2055
Tremor Action Network
PO Box 5013
Pleasanton, CA 94566-0513
Phone: (952) 462-0111
Website: http://www.tremoraction.org
Triple X syndrome support
231 W. Park Ave.
Sellersville, PA 18960
Phone: (215) 453-2117
E-mail: edr@starbyte.com
Website: http://www.voicenet.com/~markr/triple.html
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Phone: (800) 225-6872
Website: http://www.tsalliance.org
Turner Syndrome Society of Canada
7777 Keele St, Floor 2
Concord, ON L4K 1Y7
Canada
Phone: (800) 465-6744 or (416) 660-7766
Fax: (416) 660-7450
Turner Syndrome Society of England
2 Mayfield Ave.
London, W41PW
England
Phone: 44 (0)181-994 7625
Fax: 44 (0)181-995 9075
Website: http://www.exnet.com/staff/sys4/ts.html or http://www.tss.uk
Turner Syndrome Society of the United States
14450 T. C. Jester, Suite
260 Houston, TX 77014
Phone: (800) 365-9944 or (832) 249-9988
Fax: (832) 249-9987
E-mail: tesch@turner-syndrome-us.org
Website: http://www.turner-syndromeus.org
Twin Hope, Inc.
2592 West 14th Street
Cleveland, OH 44113
Phone: (502) 243-2110
Website: http://www.twinhope.com
Twins Foundation
PO Box 6043
Providence, RI 02940-6043
Phone: (401) 751-8946
E-mail: Twins@twinsfoundation.com
U
U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Phone: (888) 346-3656
Fax: (301) 402-1384
Email: custserv@nlm.nih.gov
Website: http://www.nlm.nih.gov
Unique—Rare Chromosome Disorder Support Group
P.O. Box 2189
Caterham, Surrey, CR3 5GN, England
Phone or fax: (44)(0)1883 330766
Email: info@rarechromo.org
Website: http://www.rarechromo.org
United Cerebral Palsy Association, Inc. (UCP)
1660 L Street NW, Suite 700
Washington, DC 20036-5602
Phone: (202)776-0406 or (800)872-5827
Website: http://www.ucpa.org
United Leukodystrophy Foundation
2304 Highland Dr.
Sycamore, IL 60178
Phone: (815) 895-3211 or (800) 728-5483
Fax: (815) 895-2432
Website: http://www.ulf.org
United Mitochondrial Disease Foundation
PO Box 1151
Monroeville, PA 15146-1151
Phone: (412) 793-8077
Fax: (412) 793-6477
Website: http://www.umdf.org
The University of California Medical Center, Center for the Study and Treatment of Hypospadias
400 Parnassus, Room A-610
San Francisco, CA 94143-0330
Phone: (415)353-2200
Fax: (415) 353-2480
E-mail: lbaskin@urol.ucsf.edu
Website: http://itsa.ucsf.edu/~uroweb/Uro/hypospadias/index.html
The University of Chicago, Division of Biological Sciences
5841 S. Maryland Avenue
Chicago, IL 60637
Phone: (777) 834 0555
Website: http://www.genes.uchicago.edu
University of Illinois Center for Narcolepsy Research
845 S. Damen Ave.
Chicago, IL 60612
Phone: (312) 996-5176
University of Pennsylvania Cancer Center
3400 Spruce Street
Philadelphia, PN 19104
Phone: (215) 662-4000
Website: http://www.oncolink.upenn.edu
University of Texas M.D. Anderson Cancer Center
1515 Holcombe Boulevard
Houston, TX 77030
Phone: (800) 392-1611
Website: http://www.mdanderson.org
Usher Family Support
4918 42nd Ave. South
Minneapolis, MN 55417
Phone: (612) 724-6982
V
VACTRLS Association Family Network
5585 CY Ave
Casper, WY 82604
Website: http://www.homestead.com/VAFN/VAFN.html
VATER Connection
1722 Yucca Lane
Emporia, KS 66801
Phone: (316) 342-6954
Website: http://www.vaterconnection.org
Velo-Cardio-Facial Syndrome Educational Foundation
Upstate Medical University Hospital
708 Jacobsen Hall (C.D.U.)
750 East Adams Street
Syracuse, NY 13210
Velo-Cardio-Facial Syndrome Research Institute
Albert Einstein College of Medicine
3311 Bainbridge Ave.
Bronx, NY 10467
Phone: (718) 430-2568
Fax: (718) 430-8778
E-mail: rgoldber@aecom.yu.edu
Website: http://www.kumc.edu/gec/vcfhome.html
Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
Phone: (800) 837-8428
Website: http://www.vestibular.org
VHL Family Alliance
171 Clinton Ave.
Brookline, MA 02455-5815
Phone: (800) 767-4VHL
Website: http://www.vhl.org
Vision Community Services
23 A Elm Street
Watertown, MA 02472
Phone: (617) 926-4232 or (800) 852-3029
Website: http://www.mablind.org
W
WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 E. 84th Street
New York, NY 10024
Phone: (212) 875-8312 or (800) 437-MOV2
Fax: (212) 875-8389
E-mail: wemove@wemove.org
Website: http://www.wemove.org
Weaver Syndrome Families Support (WSFS)
4357 153rd Ave. SE
Bellevue, WA 98006
Phone: (425) 747-5382
WideSmiles
PO Box 5153
Stockton, CA 95205-0153
Phone: (209) 942-2812
Website: http://www.widesmiles.org
Williams Syndrome Association
1312 N. Campbell, Suite 34
Royal Oak, MI 48067
Phone: (248) 541-3630
Fax: (248) 541-3631
Williams Syndrome Foundation
University of California
Irvine, CA 92679-2310
Phone: (949) 824-7259
Website: http://wsf.org
Wilson's Disease Association
4 Navaho Dr.
Brookfield, CT 06804
Phone: (800) 399-0266
World Arnold-Chiari Malformation Association
31 Newton Woods Road, Newton Square
Philadelphia, PA 19073
Website: http://presenter.com?~wacma/milhorat.htm
World Craniofacial Foundation
PO Box 515838
7777 Forest Lane, Suite C-621
Dallas, TX 75251-5838
Phone: (972) 566-6669 or (800) 533-3315
E-mail: worldcf@worldnet.att.net
Website: http://www.worldcf.org
X
Xeroderma Pigmentosum Registry
New Jersey Medical School
Department of Pathology
185 South Orange Ave., Room C-520
Newark, NJ 07103-2714
Phone: (201) 982-4405
Xeroderma Pigmentosum Society, Inc.
PO Box 4759
Poughkeepsie, NY 12602
Phone: (518) 851-2612
E-mail: xps@xps.org
Website: http://www.xps.org
Y
The Yale Developmental Disabilities Clinic
Yale Child Study Center
230 South Frontage Road
New Haven, CT 06520-7900
Phone: (203) 785-3488
Website: http://info.med.Yale.edu/hldstdy/autism
Z
Zain Hansen MPS Foundation
23400 Henderson Road
Covelo, CA 95420
Phone: (800) 767-3121
