Rare Disease Congressional Caucus Briefing May 7th

Rare Disease Legislative Advocates & National Organization for Rare Disorders in coordination with
Rare Disease Congressional Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), held a briefing

“Access to Care & Therapies in the New Healthcare System: A Rare Disease Perspective”

Wednesday May 7, 2014

Special Guest, Representative Tom Marino (R-PA) shares his personal story about getting access to Cystic Fibrosis specialists

•  Patient Testimonial
Lisa Lusk, Chronic Myelogenous Leukemia, Leukemia and Lymphoma Society

•  “Patient Access to Therapies in a Changing Healthcare Landscape”
Lauren Barnes, Senior Vice President, Avalere Health


• Patients Access to Treatment Act – H.R. 460
Adriane Casalotti, Deputy Chief of Staff/Legislative Director – Office of Congresswomen Lois Capps
Devon Seibert, Legislative Director – Office of Congressmen David McKinley 


The briefing was a success as we had more than 14 congressional offices represented and over 65 people in attendance. As soon as we have the video edit we post it.

Briefing Hosted by:
May 7 Caucus Briefing Logo