Tag Archives: Open Act

In November 2014, I used the chemotherapy drug Rituxan off-label for my rare disease, Immune Thrombocytopenia (ITP). The decision was made after careful consideration of all the possible outcomes. I was desperate for relief since ITP causes internal bleeding that can be fatal. This thought stayed in the back of my mind as I watched my platelets drop and my bleeding episodes increase in severity.

Dear pemphigus & pemphigoid community,

The House of Representatives is expected to vote on H.R. 6, the 21st Century Cures Act, the week of June 15th. The IPPF is urging our patient community to show its united support for this crucial legislation by contacting your representative today and ask them to co-sponsor H.R. 6, the 21st Century Cures Act.

This bill includes many provisions that could benefit our community and the rare disease community as whole including:

  • Billions in funding for the National Institutes of Health (NIH)
  • Hundreds of millions dollars in new funding for the Food & Drug Administration (FDA)
  • The OPEN ACT, which contains incentives that could double the number of rare disease treatments
  • The CURE ACT, that requires companies to publish expanded access policies
  • Patient focused drug development
  • It’s easy. Don’t wait! Go to this link to make your voice heard: http://www.congressweb.com/KAKI/39

For those not familiar with an action alert here are some simple instructions:
1. Click on the link above
2. Fill in your street address & zip code and click “take action”
3. Fill in the rest of your personal information and a personal message (optional) about what 21st Century Cures means to you
4. Review your message and click “send”

For more information on 21st Century Cures you can go to: http://energycommerce.house.gov/cures

For questions or if you are interested in getting involved in advocacy for the pemphigus & pemphigoid community, please contact Marc Yale marc@pemphigus.org