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Search Results: MCH Organizations

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 2 (2 total).

Alpha-1 Association

Annotation: The Alpha-1 Association is a member-based nonprofit organization founded in 1991 to identify those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy, and research. The association has over 60 volunteer-led support groups around the US which are supported through annual grass roots grants. The education program includes an annual national conference and co-sponsorship of regional Alpha-1 Education Days with the Alpha-1 Foundation. The advocacy program focuses on access to care; maintaining and extending Medicare benefits; genetic non-discrimination; increasing public health funding; traveling with supplemental oxygen; organ allocation for lung transplantation and includes working with the Congressional COPD Caucus to further its goals.

Keywords: Alpha-1-antitrypsin deficiency, Metabolic diseases, Patient identification

American Liver Foundation

Annotation: The American Liver Foundation (ALF) is a national nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy on behalf of those at risk of or affected by liver disease. The foundation has state and regional chapters across the United States. Services to consumers include publications and reference information.

Keywords: Hepatitis, Alagille syndrome, Alpha-1-antitrypsin deficiency, Galactosemia, Liver cirrhosis, Liver diseases, Organ transplantation

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.