NORD Celebrates Two Wins for Rare Disease Advocacy

NORD Applauds House Passage of HR 7667, the Food and Drug Amendments of 2022

June 8, 2022, Washington, DC – Today, the US House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (HR 7667), legislation with significant implications for millions of Americans living with rare diseases. The bipartisan bill is an important step forward in reauthorizing the FDA’s medical product user fee programs, helps strengthen the accelerated approval pathway, and protects the intent of the Orphan Drug Act.

“On behalf of millions of Americans living with rare diseases, we commend House lawmakers for working in a bipartisan way to pass the critically important Food and Drug Amendments of 2022,” said Heidi Ross, Vice President, Policy & Regulatory Affairs, NORD. “It is clear from this vote that our elected officials have heard our community’s calls for action, and they recognize the importance of these user fee acts in helping to address the urgent needs of their constituents who are affected by rare diseases.”

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council (RDAC)

June 9, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council, making Colorado the 10th state to establish an RDAC since the start of 2021.

“Thank you to the bill sponsors, stakeholders, and everyone in the rare disease community for helping to establish a Rare Disease Advisory Council here in Colorado. This RDAC will have a positive impact in making meaningful improvements to the everyday lives of families like mine. I’m excited about the future and optimistic we can fight rare disease together with this council,” said Nick Kirchhof, NORD Colorado Rare Action Network Volunteer State Ambassador.