Rare Disease Legislative Advocates & the National MPS Society in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:
Urgent Healthcare Policy Needs of the Rare Disease Community
Thursday, February 26th, 2015
12:00 noon – 1:00 pm
Congressional Visitors Center (CVC) Room TBA
RSVP to Receive Updated Room Information
Lunch Provided by event sponsors AbbVie, Alexion, Raptor, & Shire
Moderator: Anthony J. Castaldo, President, US Hereditary Angioedema Association (HAEA)
- Limited Access to Specialists in Private Insurance Networks, Stephanie Bozarth, National MPS Society
- Coverage Gaps for Medically Necessary Foods, Nicole Dreyer-Gavin, PKU Parent Advocate
- Medicare Coverage Challenges for Cystinosis Patients, Kristina Broadbelt, Patient Advocate
- Step-wise Therapies: Negative Implications for the Health of Rare Disease Patients, Anthony J. Castaldo, President, (HAEA)
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
