January 24: Monthly Legislative Meeting

RDLA’s January Legislative Webinar
Wednesday, January 14th, 2018
12:00 – 1:00 pm ET

  1. Expanded Carrier Screening, Jennifer Smith MD, Fellow of the American College of Obstetricians and Gynecologists, Consultants in Women’s Healthcare
  2. The Senate Health, Education, Labor and Pensions (HELP) Committee’s Plans for FDA-Related Issues, Remy Brim, Senior FDA Policy Advisor, HELP Committee Ranking Member Patty Murray (D-WA)
  3. The Lymphedema Treatment Act, Patricia Egan, Member, Board of Directors, Lymphedema Advocacy Group
  4. The OPEN ACT, Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases 
  5. Rare Disease Week on Capitol Hill, Sabah Bhatnagar, Program Director, Rare Disease Legislative Advocates, EveryLife Foundation for Rare Diseases 

*Webinar includes OPEN ACT and Rare Disease Week on Capitol Hill recording.

1-24-18 RDLA Webinar Slide Deck (click  for slides)

Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.