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Oct. 29, 2019

TOPIC: Featured News, Advocacy, Events

NORD’s Rare Action Network Mobilized for a Successful Hill Day

Posted by Valaree DonFrancesco

On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a host of issues confronted by the rare disease community, including:  

  • The importance and impact of the Orphan Drug Act;
  • The need for strong newborn screening programs and swift reauthorization of the Newborn Screening Saves Lives Act (H.R.2507, S.2158); 
  • The challenges associated with coverage of medical nutrition; 
  • The “diagnostic odyssey” endured by rare disease patients; and
  • The need to ensure affordable, adequate and accessible healthcare coverage.

“NORD’s RAN Volunteer State Ambassadors help give a voice to the rare disease community,” said Rachel Sher, Vice President of Policy and Regulatory Affairs at NORD.  “By bravely and effectively telling their stories to members of Congress and their staff, these Ambassadors made an invaluable contribution towards improving the lives of those living with rare diseases.”