Achievements

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