Nominate someone today for a RareVoice Award!

 

Rare Disease Legislative Advocates is pleased to open nominations for the 3rd Annual rarevoicelogoweb

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:

Gala Sponsor Mashup

Rare Disease Congressional Caucus Briefing

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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

Agenda:

  • 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:

Sept. Caucus briefing logo mashup

Sept. 17th & 18th Rally for Medical Research Lobby Day

Medical Research is an issue that the rare disease community cares deeply about. If you would like to participate in this year’s rally: register here

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Bio Patient & Health Advocacy Summit

The event will be held October 14-15,2014 at the Mayflower Renaissance Hotel in Washington, DC. To register, please visit this link. For those traveling from out of town, BIO has a limited number of rooms reserved in the BIO room block (available here).

Bio Patient Health Advocacy Summit

In-District Lobby Days

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, arussell@everylifefoundation.org

 July 11th Deadline to Register to Participate Read more

RDLA’s June Webinar/Conference Call

 

Tuesday, June 17th, 2014
11:30 a.m. to 12:30 p.m. EST

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

Read more

Hearing Notice – 21st Century Cures: PCAST’s Report on Drug Innovation

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.

RDLA’s April Advocate Luncheon/Conference Call

Advocate’s Luncheon/Conference Call

Wednesday, April 23rd, 2014 12 noon to 1:30 pm

Location: Offices of Polsinelli 1401 Eye Street NW 8th floor Washington, DC,  20005