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Patients Can’t Wait

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. 

In July, the House passed historic legislation, called the 21st Century Cures Act, by a wide bipartisan margin (344-77!!!).  The bill contains vital provisions that benefit the rare disease community and all the patients in need of lifesaving treatments including:
  • Billions in new funding for the National Institutes of Health and the Food and drug Administration
  • New incentives to dramatically increase the number of treatments available to rare disease patients, including the OPEN ACT (repurposing drugs for rare diseases) and the Advancing Hope Act (rare pediatric disease priority review vouchers)
  • Enhancements to the drug development process by including patient perspectives and the use of biomarker data
  • Requirements for the public dissemination of expanded access policies
  • Creation of a neurological disease surveillance program at the Centers for Disease Control & Prevention
But despite this progress, the Senate’s companion effort, 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.
The need is more pressing than ever as rare disease patients simply cannot wait for treatments.  Now is the time for advocates to take action and call the Senate to urge them to make cures a priority.
A delay in this legislation is a delay in life-saving treatment for patients.

Click HERE to get contact information for YOUR Senator.

Sample Script

  • My name is XXX from (your city/state) and I represent (the organization or rare disease) (Briefly describe organization or rare disease)
  • I’m calling to urge Senator XXXX to prioritize Innovations for Healthier Americans. Its companion legislation in the House includes vital funding for the NIH and the FDA and incentives that will dramatically boost the number of treatments for rare disease patients.
  • Please support the passage of the Innovations 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 would like a response from your Senator)
  • Thank you so much for your consideration and your leadership.

Engage Your Senator On 

Social Media

Hashtags: #Cures2015 
                 #2015GGSummit 
                 #RareDiseases
Sample Tweets:
  • US Senate must swiftly pass innovations for Healthier Americans.  Patients are waiting for treatments & cures! #Cures2015 #2015GGSummit
  • (Senator’s twitter handle) Please support passaged of Innovations for Healthier Americans to speed development of new treatments for patients #Cures2015
  • ACTION ALERT: Please call your Senator TODAY to ask them to prioritize innovations for Healthier Americans:bit.ly/CuresNOW #Cures2015
Share This Action Alert on Facebook
ACTION ALERT: Please call your Senators TODAY and ask them to make Innovations for the Healthier Americans a priority! bit.ly/CuresNow  Patients are waiting for new treatments & cures #Cures2015

 

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