NORD Press Release
Tuesday, March 18th, 2014
NORD to Host Capitol Hill Briefing on “Rare Diseases in a Changing Healthcare Landscape”
The National Organization for Rare Disorders (NORD) will host a Capitol Hill briefing to address topics of particular interest to the rare disease community during this period of significant change in our nation’s healthcare environment.
TOPIC: Rare Diseases in a Changing Healthcare Landscape
WHEN: Thursday, March 20, 2014: 2-3:30 p.m. ET
WHERE: U.S. Capitol Visitors Center, Senate Room 212-10, Washington DC
Light refreshments will be provided.
Avalere Health VP to Speak on Rare Diseases and the ACA
Sandy Robinson, Vice President, Patient Access
Solutions, Avalere Health, will discuss patient access to therapies in a changing landscape.
Three Representatives of NORD Member Organizations to Speak
Three representatives of NORD member organizations will discuss the impact of today’s changing healthcare landscape on their patient communities.
Stephanie Bozarth, Board Vice President, The National MPS Society
Charles H. Mohan Jr., CEO/Executive Director, The United Mitochondrial Diseases Foundation
Richard Gordon Zyne, President/CEO of CurePSP
Representative of BIO to Speak
Andrew Emmett, Managing Director for Science and
Regulatory Affairs, Biotechnology Industry Organization (BIO), will address the industry perspective on access to orphan therapies.