Metabolic Disease

Resources for Families

Galactosemia

Galactosemia Association of the North Eastern States (GANES)
PO Box 479, Woodbury, NJ 08096
877-795-4895
Email: galactosemia.ureach.com
www.galactosemia.com

Parents of Galactosemic Children, Inc.

885 Del Sol Street
Sparks, NV 89436
Phone: 775-626-0885
http://www.galactosemia.org

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Gaucher disease

National Gaucher Foundation
5410 Edison Lane
Suite 260
Rockville, MD 20852-3106
Phone: 800-428-2437
E-mail: ngf@gaucherdisease.org
http://www.gaucherdisease.org

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PKU

National PKU News
6969 Woodlawn Avenue
NE #16
Seattle, WA 98115
E-mail: Schuett@pknews.org

Children's PKU Network

3790 Via de la Valle
Suite 116E
Del Mar, CA 92014
Phone: 8585-509-0767 or 800-377-6677
E-mail: pkunetwork@aol.com

MSUD

MSUD Family Support Group
Sandy Bulcher
82 Ravine Road
Powell, OH 43065
Phone: 740-548-4475
dbulcher@aol.com

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Urea cycle disorders

National Urea Cycle Disorders Foundation
4841 Hill Street
La Canada, CA 19011
http://www.nucdf.org

Organic acidemias

Organic Acidemia Association
13210 35th Avenue North
Plymouth, MN 55441
Phone: 763-559-1797
E-mail: OAANews@aol.com
http://www.oaanews.org

Fatty acid oxidation disorders

Fatty Oxidation Order Support
805 Montrose Drive
Greensboro, NJ 27410
E-mail: deb@fodspport.org
http://fodsupport.org

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MPS

National MPS Society, Inc.
45 Packard Drive
Bangor, ME 04401
Phone: 207-947-1445
E-mail: presmps@aol.com
http://www.mpssociety.org

Hunter's Hope Foundation

PO Box 643
Orchard Park, NY 14127
Phone: 716-667-1200 or 877-984-4673
E-mail: hunters@huntershope.org
http://www.huntershope.org

Williams syndrome

Williams Syndrome Foundation
University of California
Irvine, CA 92679-2310
E-mail: hmlenhof@uci.edu
http://www.wsf.org

Other disorders

Glutaric Acidemia Organization
RD# 4 Box 299A
Blairsville, PA 15717
Phone: 724-459-0179

United Leukodystrophy Foundation

2304 Highland Drive
Sycamore, IL 60178
Phone: 215-895-3211 or 800-728-5483
E-mail: ulf@tbcnet.com
http://www.ulf.org

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National Marfan Foundation

22 Manhasset Avenue
Port Washington, NY 11050
Phone: 800-8-MARFAN (800-862-7326) or 516-883-8712
http://www.marfan.org

Ehlers-Danlos National Foundation

6399 Wilshire Boulevard
Suite 200
Los Angeles, CA 90048
Phone: 323-651-3038
http://www.ednf.org

National Tay-Sachs & Allied Disease Association

2001 Beacon Street
Suite 204
Brighton, MA 02135
Phone: 617-277-4463 or 877-984-4673
E-mail: NTSAD-boston@worldnet.att.net
http://www.ntsad.org

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Osteogenesis Imperfecta Foundation

804 W. Diamond Avenue
Suite 210
Gaithersburg, MD 20878
Phone: 301-947-0083 or 800-981-2663
http://www.oif.org

National Niemann-Pick Disease Foundation

PO Box 49
415 Madison Avenue
Ft. Atkinson, WI 53538
Phone: 877-287-3672
http://www.nnpdf.org

United Mitochondrial Disease Foundation

8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
Phone: 412-793-8077
E-mail: info@umdf.org
http://www.umdf.org

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Myelin Project

1747 Pennsylvania Avenue, NW
Suite 950
Washington, DC 20006
Phone: 202-452-8994
http://www.myelin.org

General support information

Children Living with Inherited Metabolic Disorders
CLIMB Building
176 Nantwich Road
Crewe, CW2 6BG
United Kingdom
E-mail: info@climb.org
http://www.climb.org.uk

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NORD - National Organization for Rare Diseases

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
http://www.rarediseases.org

Parent to Parent of Pennsylvania

6340 Flank Drive
Suite 600
Harrisburg, PA 17112
Phone: 800-986-4550 0r 717-540-4722
http://www.parenttoparent.org

Philadelphia Society for Services to Children

415 South 15th Street
Philadelphia, PA 19146
Phone: 215-875-3400

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