Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:
Precision Medicine: New Frontiers for Rare Diseases
Thursday, November 5th, 2015
12:00 pm – 1:00 pm (lunch provided)
Rayburn House Office Building
Room: B318
Moderator: John Crowley, Parent Advocate & CEO, Amicus Therapeutics
- Matt Might, President, NGLY1.org & Associate Professor, University of Utah
- Erynn Gordon, Director of Clinical Development, 23andMe
- John Stone, Counsel, Committee on Energy and Commerce, U.S. House of Representatives
- Dr. Christopher Austin, Director, National Center for Advancing Translational Sciences, NIH
- Sean Sigmon, Business Development Director, Oracle Health Sciences
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
