The Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 ("MD CARE Act", ) amended the Public Health Service Act to provide for research with respect to various forms of

muscular dystrophy Muscular dystrophies (MD) are a genetically and clinically heterogeneous group of rare neuromuscular diseases that cause progressive weakness and breakdown of skeletal muscles over time. The disorders differ as to which muscles are primarily af ...

, including Duchenne, Becker, limb girdle,

congenital A birth defect, also known as a congenital disorder, is an abnormal condition that is present at birth regardless of its cause. Birth defects may result in disabilities that may be physical, intellectual, or developmental. The disabilities c ...

, facioscapulohumeral, myotonic, oculopharyngeal,

distal Standard anatomical terms of location are used to unambiguously describe the anatomy of animals, including humans. The terms, typically derived from Latin or Greek roots, describe something in its standard anatomical position. This position prov ...

, and Emery–Dreifuss muscular dystrophies.H.R. 717--107th Congress (2001)
MD-CARE Act, GovTrack.us (database of federal legislation), (accessed July 29, 2007)Public Law 107-84
PDF as retrieved from

NIH The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late 1 ...

website

MDCC

The act established a

Federal Advisory Committee The Federal Advisory Committee Act (FACA) (), is a United States federal law which governs the behavior of federal advisory committees. In particular, it has special emphasis on open meetings, chartering, public involvement, and reporting. The U.S ...

called the Muscular Dystrophy Coordinating Committee (MDCC), which is composed of no more than 15 members to coordinate the activities across the National Institutes and with other Federal health programs and activities relating to the various forms of muscular dystrophy. By law the committee's composition is 2/3s governmental agencies and 1/3 public membership, including a broad cross section of persons affected with muscular dystrophies including parents or legal guardians, affected individuals, researchers, and clinicians. Public members appointed serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed. The MD-CARE Act directed the Committee to develop a plan for conducting and supporting research and education on muscular dystrophy through the national research institutes, and to submit this plan to Congress within the first year of the establishment of the MDCC. The MDCC has conducted two stages of planning. The first stage led to the Muscular Dystrophy Research and Education Plan for NIH, which was submitted to Congress in August 2004. This formed the basis for a subsequent, more intensive planning process that produced the January 200
MDCC Action Plan for the Muscular Dystrophies
The Action Plan contains specific research objectives that are appropriate to the missions of all MDCC member agencies and organizations and thus serves as a central focus for coordination of research in muscular dystrophy.

, Last updated May 18, 2007

Amendments

On July 28, 2014, the

United States House of Representatives The United States House of Representatives, often referred to as the House of Representatives, the U.S. House, or simply the House, is the lower chamber of the United States Congress, with the Senate being the upper chamber. Together the ...

voted to pass the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594; 113th Congress), a bill that would amend the Public Health Service Act to revise the

research program of the

National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government The federal government of the United States (U.S. federal government or U ...

(NIH). The bill would amend the Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 to authorize the Secretary of Health and Human Services to: (1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, and (2) develop and disseminate widely Duchenne-Becker muscular dystrophy considerations for adult patients and acute care considerations for all muscular dystrophy populations.

References

{{Muscular Dystrophy United States federal government administration legislation Acts of the 107th United States Congress Muscular dystrophy