Mitochondrial Disease Organizations
United Mitochondrial Disease Foundation (UMDF)
8085 Saltsburg Road Suite 201
Pittsburgh, PA 15239
Phone: 412.793.8077
Fax: 412.793.6477
email: info@umdf.org
Organic Acidemia Association
3175 Ironhorse Dr.
Woodbridge, VA 22192
Phone: 703.497.1216
Fax: 866.539.4060
email: mailto:jana.monaco@verizon.net
Fatty Oxidation Disorder Support Group
2041 Tomahawk
Okemos, MI 48864
Phone : 517.381.1940
Fax: 866.290.5206
Other National Organizations
The ARC of the US
1010 Wayne Avenue Suite 650
Silver Spring, MD 20910
March of Dimes Birth Defect Foundation Resource Center
1275 Mamaroneck Ave.
White Plains, NY 10605
Phone: 888.MODIMES
National Health Information Center
P.O. Box 1133
Washington, DC 20013-1133
800.336.4797 or 301.565.4167
email: nhicinfo@health.org
National Institutes of Health
Office of Rare Diseases
Federal Building, Room 618
7550 Wisconsin Ave.
Bethesda, MD 20892
Phone: 301.402.4336
National Organization for Rare Diseases (NORD)
P.O. Box 1968
55 Kenosia Avenue
Danbury, CT 06813
Phone: 800.999.NORD (6673)
The Oley Foundation
For home nutrition support
214 Hun Memorial
Albany Medical Center, A-23
Albany, NY 12208
Phone: 800.776.OLEY (6539)
Insurance
Health Insurance Association of America
1025 Connecticut Ave., NW
Washington, DC 20036
Phone: 202.223.7780
U.S. Department of Health and Human Services
For Medicaid and Medicare information
Health Care Financing Administration
6325 Security Blvd.
Baltimore, MD 21207
Phone: 410.786.3000
Publication
Exceptional Parent
Phone: 877.372.7368
Additional Websites
The Cleveland Clinic Department of Neurology
Ohio Department of Health, Children with Medical Handicaps
The ARC of Ohio
1335 Dublin Road, suite 205-C
Columbus, OH 43215
Phone: 800.875.2723
email: Info@thearcofohio.org
Sigma-Tau Pharmaceuticals, Inc.
Carnitine and metabolic research
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 4/5/2006...#8663
