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Gale Encyclopedia of Genetic Disorder / Gale Encyclopedia of Genetic Disorders, Two Volume Set - Volume 2 - M-Z - I

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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) 5992077

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. Glen Head, NY 11545 Phone: (800) 451-6434 Fax: (516) 671-4055

Website: http://www. hgf1@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) 5983789

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 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 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 Patient Advocacy Association

800 Bellevue Way NE, Suite 400 Bellvue, WA 98004

Phone: (425) 462-4037 or (310) 2295750 or (800) 944-7823 x4037

E-mail: lvp.ipaa@att.net

Website: http://www.vanpelt-ipaa.com

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 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 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

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

1249

Organizations

Bellevue, WA 98004

Phone: (800) 944-7823 or (425) 4624037

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 Society for Mannosidosis and Related Diseases

3210 Batavia Ave. Baltimore, MD 21214 Phone: (410) 254-4903 E-mail: info@mannosidosis

Website: http://www.mannosidosis.org

Intersex Society of North America

PO Box 301

Petaluma, CA 94953-0301 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

Ivemark Syndrome Association

52 Keward Ave., Wells

Somerset, BAS-1TS

United Kingdom

Phone: 1-(74)967-2603

I 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

I K

Kabuki Syndrome Network

168 Newshaw Lane, Hadfield Glossop, SK13 2AY

United Kingdom Phone: 01457 860110

Website: http://www.ksn-support.uk

Kids with Heart

1578 Careful Dr. Green Bay, WI 54304 Phone: (800) 538-5390

Website: http://www.execpc.com/ ~kdswhrt

KidsHealth. Nemours Center for Children’s Health Media

PO Box 269 Wilmington, DE 19899

Website: http://www.kidshealth.org/ teen/health_problems/diseases/ asthma.html

Klinefelter Syndrome and Associates, Inc.

PO Box 119

Roseville, CA 95678-0119

Phone: (916) 773-2999 or (888) 9999428

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

I 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 E-mail: kinross@istar.ca

League for the Hard of Hearing

71 West 23rd Street New York, NY 10010

Phone: (917) 305-7700 or (917) 3057999

Fax: (917) 305-7888

Website: http://www.lhh.org/index.htm

Lesch-Nyhan Syndrome Registry

New York University School of

Medicine

Department of Psychiatry

550 First Ave.

1250

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

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 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.leukemia-

lymphoma.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 Website: http://www.lissencephaly.org

Little People of America, Inc.

National Headquarters PO Box 745 Lubbock, TX 79408

Phone: (806) 737-8186 or (888) LPA2001

E-mail: lpadatabase@juno.com Website: http://www.lpaonline.org

Little People’s Research Fund, Inc.

80 Sister Pierre Dr. Towson, MD 21204-7534

Phone: (410) 494-0055 or (800) 2325773

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

I 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

1327 N. Harlem Ave.

Oak Park, IL 60302

Phone: (708) 383-0808 or (800) 3624423

Fax: (708) 383-0899

E-mail: mary@magicfoundation Website: http://www.magicfoundation

.org/ghd.html

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.

E-mail: resourcecenter@modimes 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.meckel-gruber.org

Metabolic Information Network

PO Box 670847 Dallas, TX 75367-0847

Phone: (214) 696-2188 or (800) 9452188

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

Möebius Syndrome Foundation

(MSF)

PO Box 993

Larchmont, NY 10538

Phone: (914)834-6008

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

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— Canada

2345 Yonge Street, Suite 900 Toronto, ON M4P 2E5 Canada

Phone: (416) 488-2699 E-mail: info@mdac.ca

Website: http://www.mdac.ca/main

.html

Muscular Dystrophy Association

3300 East Sunrise Dr. Tucson, AZ 85718

Phone: (520) 529-2000 or (800) 5721717

Website: http://www.mdausa.org

Muscular Dystrophy Campaign

7-11 Prescott Place

London, SW4 6BS England

Phone: +44(0) 7720 8055

E-mail: info@muscular-dystrophy Website: http://www.muscular-

dystrophy.org

Muscular Dystrophy Family

Foundation

615 North Alabama Street, Suite 330

Indianapolis, IN 46204-1213

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

1251

Organizations

Phone: (317) 632-8255 or (800) 5441213

E-mail: mdff@prodigy.net 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

I N

Narcolepsy Network

PO Box 42460

Cincinnati, OH 45242

Phone: (973) 276-0115

National Adrenal Diseases Foundation

510 Northern Boulevard

Great Neck, NY 11021

Phone: (516) 487-4992

Website: http://medhlp.netusa.net/ www/nadf.htm

National Alliance for Autism Research (NAAR)

414 Wall Street Research Park Princeton, NJ 08540

Phone: (609) 430-9160 or (888) 7776227 CA: (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 Phone: (703) 524-7600 HelpLine: (800) 950-NAMI

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 Impairment (NAPVI)

PO Box 317 Watertown, MA 02472

Phone: (617) 972-7441 or (800) 5626265

Website: http://www.spedex.com/napvi

National Association for Parents of the Visually Impaired

PO Box 317 Watertown, MA 02472

Phone: (617) 972-7441 or (800) 5626265

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

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

Website: http://www.ataxia.org

National Attention Deficit Disorder

Association

1788 Second Street, Suite 200

Highland Park, IL 60035

Phone: (847) 432-ADDA

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) 6427243

Website: http://www.ndmda.org

National Down Syndrome Congress

7000 Peachtree-Dunwoody Road, Bldg 5, Suite 100

Atlanta, GA 30328-1662

Phone: (770) 604-9500 or (800) 2326372

1252

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

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) 2214602

Fax: (212) 979-2873 E-mail: info@ndss.org

Website: http://www.ndss.org

National Easter Seal Society

230 W. Monroe Street, Suite 1800 Chicago, IL 60606-4802

Phone: (312) 726-6200 or (800) 2216827

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, Room 6A32, 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) 2391265

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

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

Two Rockledge Centre 6701 Rockledge Dr. Bethesda, MD 20824-0105 Phone: (301) 592-8573

E-mail: nhlbiinfo@rover.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) 2601789

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

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) 4111010

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

31 Center Dr., MSC 2560 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

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

1253

Organizations

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) 3529424

Website: http://www.ninds.nih.gov

National Institute on Aging Information Center

PO Box 8057 Gaithersburg, MD 20898

Phone: (800) 222-2225 or (301) 4961752

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: (202) 223-0344

Website: http://www.osteo.org/hypoph

.html

National Kidney and Urologic

Diseases Information

Clearinghouse

3 Information Way

Bethesda, MD 20892-3560

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

Website: http://www.mpssociety.org

National Newborn Screening and

Genetics Resource Center

1912 W. Anderson Lane, Suite 210 Austin, TX 78757

Phone: (512) 454-6419

Website: http://www.genes-r-us.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 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 Registry for Ichthyosis and Related Disorders

University of Washington Dermatology Department

Box 356524, 1959 N.E. Pacific Room BB1353

Seattle, WA 98195-6524

Phone: (800) 595-1265 or (206) 6163179

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) 3312020

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/

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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

I O

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: (763) 694-0017

Website: http://www.oaanews.org

Organic Acidemias UK

5 Saxon Road, Ashford

Middlesex, TW15 1QL

United Kingdom

Phone: (178) 424-5989

I P

Pallister-Hall Foundation

RFD Box 3000, Fairground Road

Bradford, VT 05033

Pancreatitis Patients’ Support Group

PO Box 164, Rochdale

Lancashire, OL11 5GY United Kingdom

Website: http://www.zen.co.uk/home/ page/ppsg/

Pancreatitis Support Network

Website: http://hometown.aol.com/ karynwms/myhomepage/business

.html

Parent Project for Muscular Dystrophy Research

1012 N. University Boulevard Middletown, OH 45042

Phone: (413) 424-0696 or (800) 7145437

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/html/reports/

PEHCAsthmaReport.pdf

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

E-mail: mlaprocido@pmdfoundation

.org

Website: http://www.pmdfoundation

.org

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) 9264797

Fax: (941) 312-0142

PWSAUSA@aol.com

Website: http://www.pwsausa.org

Prevent Blindness America

500 East Remington Road Schaumburg, IL 60173 Phone: (800) 331-2020

Website: http://www.prevent-blindness

.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

I R

Rainbows Down Under—A Trisomy

18 and Trisomy 13 Resource

SOFT Australia, 198 Oak Road

Kirrawee, NSW 2232

Australia

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

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Organizations

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.retina-

international.org

Retinitis Pigmentosa International

23241 Ventura Boulevard, Suite 117 Woodland Hills, CA 91364

Phone: (818) 992-0500 or (800) 3444877

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

I 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

15920 W. Twelve Mile

Southfield, MI 48076

Phone: (248) 477-1983

Scleroderma Foundation

12 Kent Way, Suite 101 Byfield, MA 01922

Phone: (978) 463-5843 or (800) 722HOPE

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) 2439273

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 E-mail: info@skincancer

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) 6828815

Website: http://www.well.com/user/sssa/

Spina Bifida Association of America

4590 MacArthur Boulevard NW Suite 250

Washington, DC 20007-4226

Phone: (800) 621-3141 or (202) 9443285

Fax: (202) 944-3295

SRPS Family Network (Short Rib Polydactly Syndrome)

Website: http://www.srps.net

Stanford Center for Narcolepsy

1201 Welch Rd., Room 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

Website: http://www.sads.org

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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

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 Groups For MMA Organic Acidemia Association

13210 35th Ave Plymouth, MN 55441 Phone: (763) 559-1797

Website: http://www.oaanews.org

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

I 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 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

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) 6607766

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.tss.org.uk

Turner Syndrome Society of the United States

14450 T. C. Jester, Suite 260 Houston, TX 77014

Phone: (800) 365-9944 or (832) 2499988

Fax: (832) 249-9987

E-mail: tesch@turner-syndrome-us. Website: http://www.turner-syndrome-

us.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

I U

U.S. National Library of Medicine

8600 Rockville Pike

Bethesda, MD 20894

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) 7285483

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

University of California Center for the Study and Treatment of Hypospadias

University of California Medical Center 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

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

I V

VACTRLS Association Family

Network

5585 CY Ave

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

1257

Organizations

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) 8523029

Website: http://www.mablind.org

I W

WE MOVE (Worldwide Education and Awareness for Movement Disorders)

204 E. 84th Street New York, NY 10024

Phone: (212) 875-8312 or (800) 437MOV2

Fax: (212) 875-8389 E-mail: wemove@wemove

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) 5333315

E-mail: worldcf@worldnet.att.net Website: http://www.worldcf.org

I 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

Website: http://www.xps.org

I Y

Yale-LDA Social Learning

Disabilities Project

Yale Child Study Center

230 South Frontage Road New Haven, CT 06520-7900 Phone: (203) 785-3488

Website: http://info.med.Yale.edu/ chldstdy/autism

I Z

Zain Hansen MPS Foundation

23400 Henderson Road

Covelo, CA 95420

Phone: (800) 767-3121

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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