Search Results: MCH Organizations

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This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 1 (1 total).

American Porphyria Foundation

Annotation: The American Porphyria Foundation promotes awareness and treatment of the porphyrias, a group of at least eight types of rare and complex metabolic disorders. The organization serves patients and physicians as an information source and exchange and provides individuals with the opportunity to participate in research, support groups, conferences, political action, seminars, and fund raising projects. The Foundation also offers referrals and publications for consumers, and a list serv is open to anyone. Publications include Acute Intermittent Porphyria (AIP): A Description for Patients and Their Relatives, Diet and Nutrition in Porphyria, Hematin, Questions Commonly Asked About Porphyria, Erythropoietic Protoporphyria, Porphyria Cutanea Tarda, and a quarterly newsletter.

Keywords: Metabolic diseases, Diet, Nutrition, Porphyrias

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.