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Achievements

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Learn More About These Achievements Below.

  • Successfully passed a Rare Disease Legislative Task Force in CT (March 2015)
  • Supported and helped pass the NC Rare Disease Advisory Council Bill (HB 823 – July 2015)
  • Successfully passed the IL Rare Disease Commission Bill (HB 4576 – June 2016)
  • Actively supported the passage of Step-Therapy legislation in 4 states (2016)
  • Actively supported the passage of Biosimilars legislation in 6 states (2016)
  • Conducted hill days in five states:
    • Massachusetts (SB 541)
    • Pennsylvania (SB 841)
    • Ohio (Rx Out-of-Pocket and Rare Disease Day)
    • Connecticut (HB 5517)
    • Florida (general rare disease)
  • Disseminated state-specific policy statements to local legislators and advocates in every state
  • Submitted written testimony on legislation in 30 states
  • Actively planned and participated in over 100 meetings with state legislators on key policy initiatives
  • Submitted RDD policy recommendations to the Governor, legislative leadership, and Medicaid Director in all 50 states
  • Created and launched the first-ever Rare Disease State Policy Progress Report
  • Launched a monthly State Legislative Tracker
  • Increased RareAction membership to over 1,500 people spanning 46 states.
  • Recruited 7 State Ambassadors
  • Now leading 2 state coalitions and are members of 10 state-based coalition covering a variety of issues
  • Met in-pereson with legislators, advocates and patient groups in 18 states 

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