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Jul
27

ACTION ALERT: Thank the House for 21st Century Cures

The House passed historic bipartisan legislation called the 21st Century Cures Act HR 6, and they deserve our thanks for ensuring that the voice of the rare disease community was heard.  Let’s show every member who supported 21st Century Cures how much their hard work means to us, and how eager we are to see this meaningful legislation make its way through the Senate.  Please take a moment to thank your representative for supporting the 21st Century Cures Act and the rare disease community.

Jul
22

NDD United Sign On Letter to End Sequestration

Sequestration poses significant risk to the funding NIH and FDA receives  – agencies which are critical to advancing our understanding of and treatments for rare diseases. Help end sequestration and the threat of cutting billions of dollars from our most crucial facilities by getting your organization to sign-on to the letter linked below: Read More

Jul
19

Wicker, Klobuchar Introduce Bill to Increase FDA Transparency

Senators Encourage Accountability Regarding Productive Use of Patient Data

WASHINGTON – U.S. Senators Roger Wicker, R-Miss., and Amy Klobuchar, D-Minn., today introduced the “Patient-Focused Impact Assessment (PFIA) Act,” S. 1597, which urges greater transparency of product approval at the Food and Drug Administration (FDA). The measure would require the development of a patient engagement assessment tool, the results of which would be included in the publicly disclosed safety and effectiveness data package of any approved drug.

Read more here: http://www.wicker.senate.gov/public/index.cfm/2015/6/wicker-klobuchar-introduce-bill-to-increase-fda-transparency 

News

McCaul, Van Hollen, Speier, Reed, and Capito Introduce Bipartisan Childhood Cancer STAR Act

Congressman Michael McCaul introduced the bipartisan, bicameral Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2015. 

Congressman McCaul was joined by his fellow co-chair of the Childhood Cancer Caucus Congressman Chris Van Hollen (D-MD) as well as Congresswoman

Bipartisan Policy Center Releases Bold Recommendations to Advance Medical Innovation, Help Cure Life-Threatening Diseases and Improve U.S. Competitiveness in the Global Marketplace

From an article by Joann Donnellan – Today there are 10,000 known diseases in the United States, but only 500 have established treatments. Life-threatening diseases such as Alzheimer’s, cancer, heart disease, and many others lack effective treatments or cures. The …

Wicker, Klobuchar Introduce Bill to Increase FDA Transparency

Senators Encourage Accountability Regarding Productive Use of Patient Data

WASHINGTON – U.S. Senators Roger Wicker, R-Miss., and Amy Klobuchar, D-Minn., today introduced the “Patient-Focused Impact Assessment (PFIA) Act,” S. 1597, which urges greater transparency of product approval at the Food

Full Committee Vote on the 21st Century Cures Act

The 21st Century Cures Act will be considered in front of the full Energy and Commerce Committee:

Tuesday, May 19, 2015 – 5:00 pm and Wednesday, May 20, 2015 – 10:00 am

2123 Rayburn…

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