Wed, Dec 04, 2019
11:30 AM - 12:30 PM

December 4th Rare Disease Congressional Caucus Briefing

Rare Disease Legislative Advocates in cooperation with the Rare Disease Congressional Caucus invite you to a Rare Disease lunch briefing:

The Economic Burden of Rare Diseases

Wednesday, December 4, 2019, from 11:30 a.m. until 12:30 p.m.

Capitol Visitor Center, SVC Room 203-02

Lunch will be provided 

You must have a government issued I.D. to enter the Captiol Visitor Center

Deadline to register is December 1st.

 

Speakers:

Monica Weldon, Bridge the Gap-Syngap (moderator)

Elisabeth Oehrlein, National Health Council

Michael Adelberg, Faegre Baker Daniels Consulting

Becky Abbott, National Foundation for Ectodermal Dysplasias

Kristen Vanags, Georgia PKU Connect

Annie Kennedy, EveryLife Foundation for Rare Diseases


For questions about this briefing, please contact Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org