Rare disease Advancement, Research, and Education (RARE) Act of 2018
Автор: Prader-Willi Syndrome Association
Загружено: 2020-08-12
Просмотров: 39
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During this 15-minute webinar, you will learn about the various ways you can advocate for our current federal policy priorities and how you can make a lasting and sustainable impact for those affected by PWS.
The RARE Act would provide much-needed investment in rare disease research; direct the Centers for Disease Control and Prevention (CDC) to increase its efforts in tracking and quantifying rare diseases; require the Agency for Healthcare Research and Quality (AHRQ) to implement rare disease outreach and awareness campaigns for physicians; and commission additional analysis and recommendations from the National Academy of Sciences on how to accelerate rare disease therapeutic development.
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