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Action Alert: Please thank Congress for their work on 21st Century Cures

From The EveryLife Foundation for Rare Diseases:

We are urging advocates to thank Congress for their hard work in assembling this historic legislative package.

This action alert will send an email to thank Congress for including rare disease priorities into the 21st Century Cures legislation.


  1. Click on the link: 
  2. Fill in your information.
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Rare Disease Patients are a Priority in 21st Century Cures; RDLA’s Lobby Days & Action Alerts are Having an IMPACT


After hundreds of Hill meetings, emails and calls to Congress, we are seeing the true impact of Rare Disease Patient Advocacy on the 21st Century Cures Legislation.  The latest draft released this week includes many priorities for the rare disease community – including 3 out of the 4 pieces of legislation advocates lobbied for during Rare Disease Week 2015:

  • HR 971, Orphan Product Extensions Now Accelerating Cures and Treatments Act(OPEN ACT)
  • HR 292, Advancing Research for Neurological Diseases Act
  • HR 909, Compassionate use Reform & Enhancement (CURE) Act

Other important provisions benefiting the rare disease community include, making the Pediatric Priority Review voucher program permanent, the NIH Innovation Fund, language on Precision Medicine for Orphan diseases, and patient focused drug development.

Read More


Sign-on letter from PhRMA about Patent Reform Legislation Under Consideration in Both Houses

This Sign-On Letter from PhRMA comments on patent reform legislation being considered in both the House and the Senate, and asks that Congress maintain a strong and secure patent system that address abuses that have emerged at the PTO.  With Congress moving quickly to advance comprehensive patent reform, the deadline to sign is Monday, May 18, 2015.  If this is also a priority for your organization, please contact Lauren Neff  to sign-on.


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…

Advocates Get OPEN Act Back In Latest Cures Draft Ahead Of Thursday Markup

Todd Wilson from Inside Health Policy has a nice write-up on yesterday’s successful effort to include the OPEN ACT in 21st Century Cures. Thank you to everyone who took action!

Here is some of what Todd wrote:

House lawmakers, facing …

21st Century Cures Legislative Phase to Continue THURSDAY

Energy & Commerce Subcommittee on Health to Markup Updated Discussion Draft of 21st Century Cures

The Subcommittee on Health has scheduled a markup on Thursday, May 14, 2015, at 10:00 a.m. in room 2123 of the Rayburn House Office Building …

Rare Disease Congressional Caucus Briefing – 21st Century Cures Initiative: Priorities for the Rare Disease Community

Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:

21st Century Cures Initiative: Priorities for the Rare Disease Community

Thursday May 21, 2015
12:30 pm

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