Tag Archives: National Institutes of Health

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

H.R. 6, The 21st Century Cures Act of 2015, continues to gain broad support in the United States House of Representatives. The legislation will; increase the development of research through the National Institutes of Health, improve patient-focused drug development, accelerate the approval process for new medical therapies, provide guidance on Precision Medicine, modernize the clinical trial process, expedite patient access, and streamline data and health information.

The IPPF urges you to email the following Congressional Representatives and thank them for their support in co-sponsoring H.R. 6, the 21st Century Cures Act of 2015:

New Cosponsor: Rep. Jim Costa [D-CA16]

New Cosponsor: Rep. Timothy Walz [D-MN1]

New Cosponsor: Rep. Ben Luján [D-NM3]

New Cosponsor: Rep. Christopher Gibson [R-NY19]

New Cosponsor: Rep. Bill Johnson [R-OH6]

New Cosponsor: Rep. Bill Flores [R-TX17]

New Cosponsor: Rep. Julia Brownley [D-CA26]

New Cosponsor: Rep. Lois Frankel [D-FL22]

New Cospo nsor: Rep. Rodney Davis [R-IL13]

New Cosponsor: Rep. Cheri Bustos [D-IL17]

New Cosponsor: Rep. Joseph Kennedy [D-MA4]

New Cosponsor: Rep. Ann Wagner [R-MO2]

New Cosponsor: Rep. Joaquin Castro [D-TX20]

New Cosponsor: Rep. Barbara Lee [D-CA13]

New Cosponsor: Rep. John Sarbanes [D-MD3]

New Cosponsor: Rep. Robert Latta [R-OH5]

New Cosponsor: Rep. Steve Scalise [R-LA1]

New Cosponsor: Rep. Gregg Harper [R-MS3]

New Cosponsor: Rep. Pete Olson [R-TX22]

New Cosponsor: Rep. Adam Kinzinger [R-IL16]

New Cosponsor: Rep. Mike Pompeo [R-KS4]

New Cosponsor: Rep. Chris Collins [R-NY27]

New Cosponsor: Rep. Mimi Walters [R-CA45]

New Cosponsor: Rep. Rick Allen [R-GA12]

Click on the link to go to your Representatives website and contact them. Please use this sample letter to assist in writing your email.

If you have any questions or would like to be more involved in IPPF advocacy, please contact marc@pemphigus.org