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Mar. 24, 2014

TOPIC: Advocacy, Featured News

Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

Posted by Mary Dunkle

From Left to Right: Stephanie Bozarth, Andrew Emmett, Sandy Robinson, Peter L. Saltonstall, Richard Zyne, Charles Mohan

NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing was very well received.

View a video of this event.

We thank our speakers, who did a fantastic job:

  • Stephanie Bozarth of the National MPS Society
  • Charles Mohan of the United Mitochondrial Disease Foundation
  • Richard Zyne of CurePSP
  • Sandy Robinson of Avalere Health
  • Andrew Emmett of the Biotechnology Industry Organization (BIO)

Stephanie, Chuck and Richard talked about current issues of importance from the patient perspective, including research funding, Medicare and Social Security, the need for treatments and diagnosis delay.

Sandy talked about patient access to therapies and the impact of the Affordable Care Act on the rare disease community.

Andrew discussed recent advances  and the need to continue to improve the ways in which new drugs are developed and reviewed to bring safe, effective therapies to patients who currently don’t have any.

We would like to thank all who participated for helping us make sure the rare disease patient voice is heard on Capitol Hill!