Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus

Co-Chairs Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and

Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) invite you to a briefing on:

Incentivizing Innovation for Rare Disease Treatment Development

Thursday, May 18th, 2017

To learn more about the rare disease caucus briefings, please visit the Rare Disease Congressional Caucus homepage.

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

May 18th, 2017 – Incentivizing Innovation for Rare Disease Treatment Development

March 2nd, 2017 – Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform

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

March 3rd, 2016 – The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation

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

Nov 13th, 2014 – Creating Economic Incentives to Spur the Development of Treatments for Ebola and Other Life-Threatening Rare Diseases

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