A celebration to honor advocates who give rare disease patients a voice on Capitol Hill
Thursday, November 13, 2014 Arena Stage in Washington, DC
www.RareVoiceAwards.org RareVoice Award nominations are open to the public. We encourage the community to nominate individuals and organizations who advocate for legislation and policy that benefits the rare disease community. If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination. We have nominations open for three award categories, Member of Congress or Congressional Staff, Patient Advocate or Patient Organization, and Government Agency Staff. Deadline to submit nominations is Friday August 29, 2014. Sponsorship Opportunities are available, contact Julia@RareAdvocates.org. Thank you to our sponsors:
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
Implementation of the Rare Disease Provisions in the
Food & Drug Administration Safety and Innovation Act of 2012 (FDASIA) PL 112-144
Wednesday, September 17, 2014
12:00 noon – 1:30 pm
Rayburn House Office Building, Room: B-318
Lunch Provided by event sponsors Amicus & Shire
- Sec. 901. Enhancement of accelerated patient access to new medical treatments: Accelerated Approval for rare diseases, Emil Kakkis, MD PhD, EveryLife Foundation for Rare Diseases
- Sec. 902. Breakthrough therapies, TBD, Novartis Therapeutics
- Sec. 903. Consultation with external experts on rare diseases, Stephanie Krenrich, Cystic Fibrosis Foundation
- Sec. 908. Rare pediatric disease priority review voucher incentive program, Nancy Goodman, Kids v Cancer
- Sec. 1137. Patient Participation in Medical Product Discussions, Allison Greenstein, Narcolepsy Patient Advocate
- FDA’s Strategic Plan for Accelerating the Development of Therapies for Pediatric Rare Diseases – TBD, FDA
- Emerging Biotech Perspective of the combined impact of FDASIA, TBD, Amicus Therapeutics
Limited Seating, RSVP to attend: To register click here.
Briefing Hosted by:
One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days
For help and questions contact Andy Russell @ 415 884-0223, email@example.com
July 11th Deadline to Register to Participate Read more
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
The Subcommittee on Health will hold a hearing on Tuesday, May 20, 2014, at 10:00 a.m. in 2322 Rayburn House Office Building. The hearing is entitled “21st Century Cures: The President’s Council of Advisors on Science and Technology (PCAST) Report on Drug Innovation.” Witnesses will be announced and are by invitation only. The hearing webcast will be available at http://energycommerce.house.gov/.
A bipartisan staff briefing will be held on Monday, May 19, 2014, at 4:00 p.m. in 2218 Rayburn House Office Building. The Republican staff briefing will follow immediately after the bipartisan briefing in 2218 Rayburn. The Democratic staff briefing will follow immediately after the bipartisan briefing in 2322 Rayburn.
If you have any questions concerning this hearing, please contact John Stone, Carly McWilliams, Paul Edattel, Brenda Destro, or Katie Novaria at (202) 225-2927.
Wednesday, May 21, 2014