Wed, Nov 15, 2017
12:00 PM - 1:15 PM

Rare Disease Congressional Caucus Briefing November 15

   

Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus

Co-Chairs Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and 

Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) invite you to a briefing on

Diagnostic Challenges for Rare Disease Patients

Wednesday, November 15, 2017

12:00 – 1:15pm ET
Moderator: Elisa Seeger, Founder, Aidan Jack Seeger Foundation 
  • Newborn Screening and the Federal Government 
    • Rebecca Abbott, Deputy Director of Federal Affairs for Public Health, March of Dimes 
  • The Role of Genetic Sequencing in Diagnosis 
    • Cristina Might, Founder and President, NGLY1.org
  • Whole Genome Sequencing for Children with Rare and Undiagnosed Genetic Disease
    • Ryan Taft, Senior Director, Scientific Research, Illumina
  • The Challenge of Access to Genetic Testing 
    • Chris and Erin Lee, Founders, Piper's Kidney Beans
  • The Future of Diagnostics 
    • Cynthia Tifft, Deputy Clinical Director, National Human Genome Research Institute and Director, Pediatric Undiagnosed Diseases Program, National Institutes of Health 
  • The MSSNG Program 
  • Stuart Spielman, Senior Policy Advisor and Counsel, Autism Speaks

Event Location

Rayburn House Office Building, Room 2203
Rayburn House Office Building, 45 Independence Ave SW, Washington, DC 20515
Washington, DC 20515
Map


The registration deadline for this event has passed.