Mitochondrial Disease Organizations

United Mitochondrial Disease Foundation (UMDF)

8085 Saltsburg Road Suite 201

Pittsburgh, PA 15239

Phone: 412.793.8077

Phone: 888.317.8633 - Toll free

www.umdf.org

Organic Acidemia Association

Carol Barton, Executive Director

9040 Duluth Street

Golden Valley, MN 55427

Email: mkstagni@gmail.com

Phone: 763.559.1797 (Central Time)

Toll-free fax: 866.539.4060

www.oaanews.org

Fatty Oxidation Disorder Support Group

Deb Lee Gould, MED

Director, FOD Family Support Group

P. O. Box 54

Okemos, MI 48805

Phone: 517.381.1940 (EST 8am - 8pm)

www.fodsupport.org

Other National Organizations

The ARC

2421 Community College Ave.

William Patrick Day Early Childhood Center

Cleveland, OH 44115

Phone: (216) 622.0755

Email: arcgc@thearcofgreatercleveland.org

1825 K Street, NW, Suite 1200, Washington, DC 20006

(800) 433-5255

www.thearc.org

March of Dimes Birth Defect Foundation Resource Center

1275 Mamaroneck Ave.

White Plains, NY 10605

Phone: 914.997.4488

www.modimes.org

National Health Information Center (NHIC)

Office of the Assistant Secretary for Health, Office of the Secretary,

U.S. Department of Health and Human Services

1101 Wootton Parkway, Suite LL100

Rockville, MD 20852

Phone: 301-496-0176

Fax: (240) 453-8282

Email: odphpinfo@hhs.gov

National Institutes of Health (NIH)

9000 Rockside Pike

Bethesda, MD 20892

Phone: 301.496.4000

http://www.nih.gov/

National Organization for Rare Diseases (NORD)

P.O. Box 1968 55

Kenosia Avenue

Danbury, CT 06810

Phone: 203.744.0100

Fax: 203.798.2291

www.rarediseases.org

The Oley Foundation

For home nutrition support

43 New Scotland Ave., MC-28

Albany Medical Center Albany, NY 12208-3478

800.776.6539 — toll free in US and Canada

518.262.5079 — calls from Europe and elsewhere

518.262.5528 — fax

www.oley.org