Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus
Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY),
Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN) welcome you to:
Strengthening Medical Innovation in America for Rare Disease Patients
Wednesday, September 14th, 2016
12:00 pm – 1:00 pm
Cannon House Caucus Room, Washington, D.C., 20004
- Moderator: Vanessa Procter, Senior Director, Global Government Affairs and Alliance Development, Alexion
- Impact of Price Controls on Medical Innovation
- Stephen Ezell, Vice President, Global Innovation Policy, Information Technology and Innovation Foundation (ITIF)
- Value and Innovation Coalition
- Joel White, President, Horizon Government Affairs
- Starting a Biotechnology Company to Save your Child
- Tracy Seckler, Co-founder, Charley’s Fund, Board Member, Akashi Therapeutics
- The Rare Disease Megafund
- Scott Hinkle, Legislative Director, Representative Juan Vargas
- Innovation for the American Public
- Doug Usher, Managing Partner, Purple Strategies
- Streamlining Drug Development with 21st Century Tools
- Isabelle Lousada, President & CEO, Amyloidosis Research Consortium
Ask your Members of Congress to Join the Caucus
It will only take 2 minutes: RDLA will automatically find your legislators for you. All you need to do is enter your address and add a personal note about why it’s important to you. If your legislator is already a member of the Caucus then you can send a thank you letter to your legislator instead.
Caucus Briefings:
September 14th, 2016 – Strengthening Medical Innovation in America for Rare Disease Patients
May 18th, 2016 – The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
Nov. 5th, 2015 – Precision Medicine: New Frontiers for Rare Diseases
May 21st, 2015 – 21st Century Cures Initiative: Priorities for the Rare Disease Community
Feb. 26th, 2015 – Urgent Healthcare Policy Needs of the Rare Disease Community
Sept. 17th, 2014 – Implementation of Rare Disease Provisions in FDASIA
May 7th, 2014 – Access to Care & Therapies in the New Healthcare System: A Rare Disease Perspective
Feb. 28th, 2014 – Science Behind Rare Disease Policy, Feat. Special Guest Jonny Lee Miller
