Gale Encyclopedia of Genetic Disorder / Gale Encyclopedia of Genetic Disorders, Two Volume Set - Volume 2 - M-Z - I
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Chromosome 15
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Prader-Willi syndrome (15q) |
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FBN1: Marfan syndrome
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Hereditary hearing loss |
Chromosome 17
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Canavan disease |
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p53: Li Fraumeni syndrome |
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Tumor suppressor protein |
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LIS1: Lissencephaly |
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CMT1A: Charcot-Marie-Tooth syndrome |
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FALDH: Sjogren-Larsson syndrome |
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BRCA1: Breast cancer/ovarian cancer |
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MKS1: Meckel syndrome, Type 1
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SOX9: Campomelic dysplasia
Chromosome 19
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Donohue syndrome |
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Central core disease |
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APOE: Atherosclerosis |
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LCA1: Leber congenital amaurosis, Type 1 |
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DM: Myotonic dystrophy |
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PKD1: Polycystic kidney disease |
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Chromosome 16 |
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FMF: Familial Mediterranean fever |
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Rubinstein-Taybi syndrome |
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Map |
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1
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Crohn’s disease
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21 BBS2: Bardet-Biedl syndrome, Type 2
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ABCC6: Pseudoaxanthoma elasticum (16)
Chromosome 18
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MAFD1: Manic affective disorder 1 |
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NPC1: Niemann-Pick disease |
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DPC4 (Smad4): Pancreatic cancer |
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222
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Chromosome 20
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MKKS: McKusick-Kaufman syndrome |
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ADA1: Severe combined immunodeficiency |
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MAS: McCune-Albright syndrome |
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CDMP1: Brachydactyly
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
1239 |
Chromosome Map
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Chromosome 21 |
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Chromosome 22 |
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Multifactorial inheritance |
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Homocystinuria |
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DGS: DiGeorge syndrome |
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ALS1: Amyotrophic lateral sclerosis |
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SOD1: Superoxide dismutase 1 |
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NF2: Neurofibromatosis |
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APS1: Autoimmune polyglandular syndrome |
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Chromosome X
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PIG-A: Paroxysomal nocternal |
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hemoglobinuria |
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DMD: Duchenne muscular dystrophy |
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Spondyloepiphyseal dysplasia |
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Renpenning syndrome |
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Sutherland-Hann syndrome |
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ATP7A: Menkes syndrome |
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ATRX: Smith-Fineman-Myers syndrome |
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GLA: Fabry disease |
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IL2RG: X-linked severe combined immunodeficiency |
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OCRL1: Lowe syndrome |
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SGBS1: Simpson-Golabi-Behmel syndrome |
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FMR1: Fragile X syndrome |
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STA: Emery-Dreifuss muscular dystrophy |
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X-linked hydrocephaly |
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ALD: Adrenoleukodystrophy |
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Asplenia (x)
KAL: Kallman syndrome (x)
Chromosome Y
SRY(TDF): Testis-determining factor
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1240 |
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
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 further information, as well as other online and print sources. Many of the organizations listed provide information for multiple disorders and have links to additional related websites. E-mail addresses and web addresses listed were provided by the associations; Gale Group 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
I 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 E-mail:
info@aboutfaceinternational.org Website: http://www
.aboutfaceinternational.org
AboutFace USA
PO Box 458
Crystal Lake, IL 60014
Phone: (312) 337-0742 or (888) 4861209
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) 5213025
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) 2287321.
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
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
1241 |
Organizations
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 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 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) 4665747
Fax: (773) 761-5298 E-mail: aaksis@aaksis.org
Website: http://www.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
American Association of Kidney Patients
100 S. Ashley Dr., Suite 280 Tampa, FL 33602
Phone: (800) 749-2257 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
60 Executive Park South, Suite 150 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) 4248666
Website: http://www.acb.org
American Diabetes Association
1701 N. Beauregard Street Alexandria, VA 22311
Phone: (703) 549-1500 or (800) 3422383
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) 2428721
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
1242 |
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
Phone: (800) 465-4837 or (888) 4437222
Website: http://www.liverfoundation
.org
American Lung Association
1740 Broadway
New York, NY 10019-4374
Phone: (212) 315-8700 or (800) 5864872
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) 3347922 v/tty
Website: http://www.deafchildren.org/ asdc2k/home/home.shtml
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, NY 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
PO Box 1836
Falls Church, VA 22041-1836 Phone: (410) 243-4483
Fax: (703) 998-8893
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) 4326435
Fax: (630) 655-0391
E-mail: info@angelman
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
St. 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
The Arthrogryposis Group (TAG)
1 The Oaks, Gillingham Dorset, SP8 4SW United Kingdom Phone: 01-747-822655
Website: http://tagonline.org.uk
Association for Glycogen Storage Disease (United Kingdom)
Phone: 0131 554 2791 Fax: 0131 244 8926
Website: http://www.agsd.uk
Organizations
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
1243 |
Organizations
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
E-mail: 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.birthdefects.org
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 E-mail: avenues@sonnet.com
Website: http://www.sonnet.com/ avenues
I B
Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.
Mount Sinai Medical Center, One Gustave 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
Beckwith-Wiedemann Support Network
2711 Colony Road Ann Arbor, MI 48104
Phone: (734) 973-0263 or (800) 8372976
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
I 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
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) 6671846
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
1244 |
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
Cardiac Arrhythmias Research and |
Website: http://www.changingfaces |
|
Education Foundation, Inc. |
.co.uk |
|
2082 Michelson Dr., #301 |
Charcot Marie Tooth Association |
|
Irvine, CA 92612-1212 |
||
Phone: (949) 752-2273 or (800) 404- |
(CMTA) |
|
9500 |
2700 Chestnut Parkway |
|
E-mail: care@longqt |
Chester, PA 19013 |
|
Website: http://www.longqt.org |
Phone: (610) 499-9264 or (800) 606- |
|
Cardio-Facio-Cutaneous Support |
CMTA |
|
Fax: (610) 499-9267 |
||
Network |
E-mail: cmtassoc@aol.com |
|
157 Alder Ave. |
Website: http://www.charcot-marie- |
|
McKee City, NJ 08232 |
tooth.org |
|
Phone: (609) 646-5606 |
CHARGE Family Support Group |
|
Cardio-Facio-Cutaneous Syndrome |
||
82 Gwendolen Ave. |
||
Family Network |
London, E13 ORD |
|
183 Brown Road |
United Kingdom |
|
Vestal, NY 13850 |
Phone: 020-8552-6961 |
|
Phone: (607) 772-9666 |
Website: http://www.widerworld.co.uk/ |
|
Website: http://www.cfcsyndrome.org |
charge |
|
Cardio-Facio-Cutaneous Syndrome |
CHARGE Syndrome Foundation |
|
Foundation |
2004 Parkade Boulevard |
|
3962 Van Dyke Street |
Columbia, MO 65202-3121 |
|
White Bear Lake, MN 55110 |
Phone: (800) 442-7604 |
|
Website: http://www.cfcfoundation |
Website: http://www.chargesyndrome |
|
.com |
.org |
|
Center for Loss in Multiple Birth, |
CHASER (Congenital Heart |
|
Inc. (CLIMB) |
Anomalies Support, Education, |
|
PO Box 1064 |
and Resources) |
|
Palmer, AK 99654 |
2112 North Wilkins Road |
|
Phone: (907) 222-5321 |
Swanton, OH 43558 |
|
Center for Neurologic Study |
Phone: (419) 825-5575 |
|
Website: http://www.csun.edu/ |
||
9850 Genesee Ave., Suite 320 |
~hfmth006/chaser |
|
Lajolla, CA 92037 |
Cherub Association of Families & |
|
Phone: (858) 455-5463 |
||
Fax: (858) 455-1713 |
Friends of Limb Disorder |
|
E-mail: cns@cts |
Children |
|
Website: http://www.cnsonline.org |
8401 Powers Road |
|
Center for Study of Multiple Birth |
Batavia, NY 14020 |
|
Phone: (716) 762-9997 |
||
334 E. Superior Street, Suite 464 |
Children Living with Inherited |
|
Chicago, IL 60611 |
||
Phone: (312) 266-9093 |
Metabolic Diseases |
|
Website: http://www.multiplebirth.com |
The Quadrangle, Crewe Hall, Weston |
|
Centers for Disease Control |
Road, Crewe |
|
Cheshire, CW1-6UR |
||
Office of Genetics and Disease |
United Kingdom |
|
Prevention |
Phone: 127 025 0221 |
|
4770 Buford Highway NE |
Fax: 0870-7700-327 |
|
Atlanta, GA 30341-3724 |
Website: http://www.climb.uk |
|
Phone: (770) 488-3235 |
Children’s Blood Foundation |
|
Fax: (770) 488-3236 |
||
E-mail: genetics@cdc.gov |
333 East 38th Street, Room 830 |
|
Website: http://www.cdc.gov/genetics |
New York, NY 10016-2745 |
|
Changing Faces |
Phone: (212) 297-4336 |
|
E-mail: cfg@nyh.med.cornell.edu |
||
1 & 2 Junction Mews |
Children’s Brain Disease Foundation |
|
London, W2 1PN |
||
United Kingdom |
350 Parnassus Ave., Suite 900 |
|
Phone: 0207 706 4232 |
San Francisco, CA 94117 |
|
E-mail: info@changingfaces.co.uk |
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) 5353643
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.emdn-mitonet.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 Deletion Outreach, Inc.
PO Box 724
Boca Raton, FL 33429-0724
Phone: (561) 391-5098 or (888) 2366880
Fax: (561) 395-4252
E-mail: cdo@worldnet.att.net Website: http://members.aol.com/
cdousa/cdo.htm
CMT International
Attn: Linda Crabtree 1 Springbank Dr.
St. Catherine’s, ON L2S2K1 Canada
Phone: (905) 687-3630 Website: http://www.cmtint.org
Organizations
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
1245 |
Organizations
Coalition for Heritable Disorders of |
Corporation for Menkes Disease |
|
Connective Tissue (CHDCT) |
5720 Buckfield Court |
|
382 Main Street |
Fort Wayne, IN 46814 |
|
Port Washington, NY 11050 |
Phone: (219) 436-0137 |
|
Phone: (516) 883-8712 |
|
|
Website: http://www.chdct.org |
Council of Regional Networks for |
|
|
||
Colon Cancer Alliance |
Genetic Services |
|
Genetic Services Program, Wadsworth |
||
175 Ninth Ave |
Center Labs & Research |
|
New York, NY 10011 |
PO Box 509, Room E299, Empire |
|
Phone: (212) 627-7451 |
State Plaza |
|
Website: http://ccalliance.org |
Albany, NY 12201-0509 |
|
|
Phone: (518) 474-7148 |
|
Colorectal Cancer Network |
Website: http://www.cc.emory.edu/ |
|
PEDIATRICS/corn/corn.htm |
||
PO Box 182 |
||
|
||
Kensington, MD 20895-0182 |
Craniosynostosis and Parents |
|
Phone: (301) 879-1500 |
||
Website: http://www.colorectal-cancer |
Support (CAPS) |
|
.net |
2965-A Quarters |
|
|
Quantico, VA 22134 |
|
Columbia Presbyterian Medical |
Phone: (877) 686-CAPS or (703) 445- |
|
1078 |
||
Center |
||
Website: http://www.caps2000.org/ |
||
Dept. of Neurological Surgery |
||
|
||
710 West 168 Street |
Creutzfeldt-Jakob Disease |
|
New York, NY 10032 |
||
Phone: (212) 305-0378 |
Foundation, Inc. |
|
Fax: (212) 305-3629 |
PO Box 611625 |
|
Website: http://cpmcnet.columbia.edu/ |
Miami, FL 33261-1625 |
|
dept/nsg/PNS/Hydrocephalus.html |
Fax: (954) 436-7591 |
|
|
Website: http://www.cjdfoundation.org |
|
Congenital Heart Anomalies |
Cri du Chat Society |
|
Support, Education, and |
||
Resources |
Dept. of Human Genetics, Box 33, |
|
2112 North Wilkins Road |
MCV Station, |
|
Swanton, OH 43558 |
Richmond VA 23298 |
|
Phone: (419) 825-5575 |
Phone: (804) 786-9632 |
|
Website: http://www.csun.edu/ |
|
|
~hfmth006/chaser |
Cri du Chat Syndrome Support |
|
|
||
Congenital Heart Disease |
Group |
|
Website: http://www.cridchat.u-net.com |
||
Information and Resources |
|
|
1561 Clark Dr. |
Crouzon Support Network |
|
Yardley, PA 19067 |
||
PO Box 1272 |
||
Website: http://www.tchin.org |
||
Edmonds, WA 98020 |
||
|
||
Conjoined Twins International |
E-mail: penny@crouzon |
|
Website: http://www.crouzon.org |
||
PO Box 10895 |
|
|
Prescott, AZ 86304-0895 |
Crouzon’s/Meniere’s Parent Support |
|
|
||
Cooley’s Anemia Foundation, Inc. |
Network |
|
3757 North Catherine Dr. |
||
129-09 26th Ave. #203 |
Prescott Valley, AZ 86314-8320 |
|
Flushing, NY 11354 |
Phone: (800) 842-4681 |
|
Phone: (800) 522-7222 or (718) 321- |
E-mail: katy@northlink.com |
|
2873 |
|
|
Website: http://www.thalassemia.org |
Cure Autism Now (CAN) Foundation |
|
|
||
Cornelia de Lange Syndrome |
5455 Wilshire Boulevard Suite 715 |
|
Los Angeles, CA 90036-4234 |
||
Foundation, Inc. |
Phone: (500) 888-AUTISM |
|
302 West Main Street, Suite 100 |
Fax: (323) 549-0547 |
|
Avon, CT 06001 |
E-mail: info@cureautismnow |
|
Phone: (860) 676-8166 (800) 223-8355 |
Website: http://www.cureautismnow |
|
Fax: (860) 676-8337 |
.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
I 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
575 Fifth Ave., 11th Floor New York, NY 10017 Phone: (800) 535-3323 E-mail: drf@drf
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
1246 |
G A L E E N C Y C L O P E D I A O F G E N E T I C D I S O R D E R S |
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.dystonia-
foundation.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.org.uk
I 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
1817 Patterson Street
Nashville, TN 37203 Phone: (800) 545-HEAR
E-mail: earfound@earfoundation Website: http://www.theearfound.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
4350 East West Highway, Suite 500 Bethesda, MD 20814-4410
Phone: (301) 941-0200 Fax: (301) 941-0259
E-mail: endostaff@endo-society.
Epilepsy Foundation of America
4351 Garden City Dr., Suite 406 Landover, MD 20785-2267
Phone: (301) 459-3700 or (800) 3321000
Website: http://www
.epilepsyfoundation.org
European Chromosome 11q Network
Attn: Annet van Betuw Else Mauhsstraat 7 6708 NJ Wageningen Netherlands
Phone: (+31) 317-42 33 45 Fax: (+31) 317-42 69 80 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
I 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) 3322373
E-mail: faces@faces-cranio. Website: http://www.faces-cranio.org/
FacioScapuloHumeral Society, Inc.
3 Westwood Road Lexington, MA 02420 Phone: (781) 860-0501
E-mail: carol.perez@fshsociety Website: http://www.fshsociety.org
Factor V Leiden
Website: http://www.fvleiden.org
Families of Adults Afflicted with Asperger’s Syndrome (FAAAS)
PO Box 514 Centerville, MA 02632
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.
Organizations
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Organizations
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) 9993429
Website: http://www
.fetalalcoholsyndrome.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) 6404673
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) 3933223
Foundation Fighting Blindness
Executive Plaza 1, Suite 800, 11350 McCormick Road
Hunt Valley, MD 21031
Phone: (888) 394-3937
Website: http://www.blindness.org
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) 5453286
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
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
I G
GeneTests
Children’s Hospital and Regional Medical Center
PO Box 5371
Seattle, WA 98105-0371
Phone: (206) 527-5742 Fax: (206) 527-5743
Website: http://www.genetests.org/
Genetic Alliance
4301 Connecticut Ave. NW, #404 Washington, DC 20008-2304 Phone: (202) 966-5557
Helpline: (800) 336-GENE Fax: (888) 394-3937
E-mail: info@geneticalliance 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
33 Maiden Lane New York, NY 10038
Phone: (800) 452-8266 Website: http://www.glaucoma-
foundation.org
Glaucoma Research Foundation
200 Pine Street, Suite 200
San Francisco, CA 94104
Phone: (800) 826-6693
Global Initiative for Asthma
Tim Clark, Chairman of GINA
Phone: (207) 594-5008 Fax: (207) 594-8802 E-mail: shurd@prodigy.net
Website: http://www.ginasthma.com
Goldenhar Parent Support Network
Attn: Kayci Rush
3619 Chicago Ave.
Minneapolis, MN 55407-2603
Phone: (612) 823-3529
Goldenhar 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
Website: http://i.am/bbds.page
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) 458865
Fax: (718) 743-1171
E-mail: guardians1@juno.com
I 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@haemophiliasoc.demon.co.uk
Website: http://www.haemophilia-soc
.demon.co.uk/vwd%20services1
.html
Headlines: the Craniofacial Support Group
Website: http://www.headlines.org.uk
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