2016

SIGNED ON

  • January 2016 – Sign on to letters Urge Obama Administration to Enforce ACA Nondiscrimination Provisions; and support of the 21st Century Cures Act (HR 6)
  • March 2016 – Sign on to letter for Newborn Screening
  • April 2016 – Sign on to letter to Senate HELP Committee Chairman Lamar Alexander and Ranking Member Patty Murray in support of their efforts to advance Innovations legislation bolstered by supplemental funding for NIH.
  • October 2016 – Sign on to Rare Pediatric PRV Program as part of 21st Century Cures Act

ACTIONS TAKEN & RECOGNITION RECEIVED

  • February 2016 – Senior Peer Health Coach Marc Yale and Awareness Program Manager Kate Frantz were joined by 6 P/P patients in Washington DC for Rare Disease Week. In Sacramento, the staff joined other rare disease organizations at the State Capitol, then partnered with NORD for Rare Disease Day with the Sacramento Kings hosting 100 rare disease patients and supporters at an NBA game.

2015

SIGNED ON

  • January 2015 – Sign on to letter To Bring Treatment to Patients with Rare Diseases
  • February 2015 – Sign on to letter for OPEN ACT
  • May 2015 – Sign On to Show Support for Continuing Incentives for Manufacturers Seeking Pediatric Rare Disease Indications.
  • April 2015 – Sign-on letter supporting H.R. 1078, the SOS Act.
  • March 2015 – Sign-on letter opposing undoing GINA
  • March 2015 – Sign On Letter to Ensure Medicaid patients with rare diseases access to prescribed therapy.
  • April 2015 – Sign-on letter supporting H.R. 1078, the SOS Act.
  • May 2015 – Sign On to Show Support for Continuing Incentives for Manufacturers Seeking Pediatric Rare Disease Indications.
  • June 2015 – Joined National Health Council 21st Century Cures Sign-on Letter
  • July 2015 – Signed on to the letter in support of the $10 billion NIH Innovation Fund, which is included in the 2nd draft of the 21st Century Cures legislation.
  • July 2015 – Joined United for Medical Research and the National Health Council in opposing the Brat amendment that cuts critical NIH funding in the 21st Century Cures Act through Politico ad campaign.
  • October 2015 – IPPF added to Sign-on letter with PPMD to Chairman Alexander and Ranking Member Murray regarding Enhanced Patient Engagement.
  • October 2015 – IPPF added to Sign-on letter with NORD supporting the Advancing Targeted Therapies for Rare Diseases Act (S.2030).
  • November 2015 – IPPF added to sign-on Letter in support of Dr. Robert Califf for the position of commissioner of the Food and Drug Administration

ACTIONS TAKEN & RECOGNITION RECEIVED

  • May 2015 – Senior Peer Health Coach presented IPPF CEO Will Zrnchik with NORD’s Abbey S. Meyers Leadership Award for outstanding leadership in rare disease advocacy.
  • September 2015 – IPPF members Todd Kuh (PV), Marc Yale (MM), and a fellow patient join the Coalitions of Skin Diseases at the American Academy of Dermatology Association Legislative Day. Collectively, they meed with 8 offices on our P/P communities behalf.