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ACTION ALERT: Don't Let Critical Senate Legislation Stall!


Urge your Representative to Pass the Ensuring Access to Clinical Trials Act of 2015 (H.R. 209)


URGE THE SENATE TO PRIORITIZE CURES!

One minute of your day could mean millions of minutes for those diagnosed with Duchenne.


Today, patient advocates from across the country will unite in a day of action to urge the Senate to make medical innovation a top priority.

Earlier this year the Duchenne community advocated for an important piece of legislation called 21st Century Cures. The bill passed the House in June by an overwhelming majority (344-77) and contained a number of promising provisions our community helped champion and fight for, including:

  • Increased funding for the National Institutes of Health (NIH) & the Food & Drug Administration (FDA)
  • Incorporating the patient perspective into the drug development and regulatory review process (patient focused drug development)
  • Clarifying the use of platform technologies - Utilizing early data from trials to shorten follow on trials (such as in exon skipping)
  • Providing new incentives for the development of drugs for rare diseases (OPEN Act)
  • Investing in 21st century science and next generation investigators


But despite this huge victory in the House, the Senate’s version of the bill, called Innovation for Healthier Americans, has stalled. We cannot allow this to happen. The rare disease community must unite and urge the Senate to prioritize cures. A coalition of rare disease advocates led by RDLA (Rare Disease Legislative Advocates) are lighting up the lines at the Senate, today, Friday September 25th to make a combined impact with one message - urge the Senate to prioritize cures. Below you will find all you need to make this happen. We are asking everyone to call your Senators and use social media to get their attention. A delay in this legislation is a delay in life-saving treatment for patients.

Let's Light up the Senate Phone Lines!


Sample Phone Script:

  • My name is XXXX from [your city/state] and I represent the Duchenne community [Briefly explain the disease].
  • I'm calling today to urge Senator XXXX to prioritize Innovation for Healthier Americans. Its companion legislation in the House includes vital funding for the NIH & the FDA and incentives that will dramatically boost the number of treatments for rare disease patients.
  • Please support the passage of the Innovation for Healthier Americans legislation this year. A delay in legislation is a delay in desperately-needed treatments. Patients simply cannot wait. [Provide your contact information if you wish for a response from your Senator].
  • Thank you so much for your consideration and your leadership.


Click here for Senate phone numbers.

Engage Your Senators on Social Media

HASHTAGS: #Cures2015 #2015GGSummit #RareDiseases

Sample Tweets:

  • US Senate must swiftly pass Innovation for Healthier Americans. Patients are waiting for new treatments & cures! #Cures2015 #2015GGSummit
  • [Senator’s Twitter handle] Please support passage of Innovation for Healthier Americans to speed development of new treatments for patients #Cures2015
  • ACTION ALERT: Please call your Senators TODAY to ask them to prioritize Innovation for Healthier Americans bit.ly/CuresNOW #Cures2015


Click here for Senate Twitter handles.






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