Action ALERT for Pennsylvania Advocates: Contact the Senate to Boost Rare Disease Treatments

Dear Advocate,

As you may know, the House passed the Orphan Products Extension Now, Accelerating Cures & Treatments or OPEN ACT in July as part of a broader legislative package called the 21st Century Cures Act. The OPEN ACT has the potential to double the number of treatments available to rare disease patients.

Since passing the House, the bill has stalled in the Senate. Your Senator, the Honorable Bob Casey (D-PA) is a key decision-maker on this vital legislation. Please take a moment to call his office to ask that they support the bipartisan OPEN ACT, co-sponsored by Sens. Hatch (R-UT) and Klobuchar (D-MN). You can find suggested talking points below:

Senator Casey’s Phone Number: 202-224-6324

  • My name is XXXX and I’m calling from (your city in PA) and I’m a (patient, parent advocate, researcher etc. – briefly explain your connection to rare disease)
  • I’m calling today to urge Senator Casey to co-sponsor the OPEN ACT, Senate bill 1421
  • The OPEN ACT could help double the number of treatments available to rare disease patients and is supported by 155 national patient organizations
  • Thank you very much for your time and consideration

Please remember to share this action alert with your friends, family, and colleagues in Pennsylvania. Your efforts will make an impact!


The EveryLife Team