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| The Marfan Foundation ： ウィキペディア英語版 |
The Marfan Foundation
The Marfan Foundation (formerly National Marfan Foundation, NMF) is a non-profit organization in the United States established to raise awareness and promote research on treatment of Marfan syndrome and related disorders. The Foundation provides information about Marfan syndrome and funds research for the purposes of saving lives and improving the quality of life for people affected by the condition which is a genetic connective tissue disorder. The Foundation also lobbies Congress to fund Marfan syndrome research and engages in its own fundraising activities.〔(【引用サイトリンク】 title =How We Help )〕
==History==
The Foundation was established in 1981 by Priscilla Ciccariello, who lost a husband and son to the disorder, and Reed E. Pyeritz, MD, a geneticist at Johns Hopkins Hospital.〔(【引用サイトリンク】 Celebrate National Marfan Foundation's 30th Anniversary by Voting in Chase Community Giving )〕 In addition to providing grants for research on Marfan syndrome, the foundation raises awareness of the condition, which often goes undiagnosed, among health care providers and the public. The Foundation hosts an annual conference, has dozens of chapters and support groups across the U.S., and sponsors fundraising events. Carolyn Levering became the Marfan Foundation’s first President & CEO in 1994. She announced her retirement in early 2014. Before it began using the current name, the organization was known as the "National Marfan Foundation."
抄文引用元・出典: フリー百科事典『 ウィキペディア（Wikipedia）』
■ウィキペディアで「The Marfan Foundation」の詳細全文を読む
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