21st Century Cures: Politics and Rare Disease
Section outline
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We will be discussing how Capitol hill views rare disease, research, and funding from a bipartisan panel of health care policy advisors. Dr. Karen Summar is a developmental pediatrican and Dr. Eric Flamm has extensive knowledge of the orphan drug act.
Come prepared with questions! From Dr. Summar " Tell them to plan to come with questions – there are no naïve or dumb questions. Also, have them think about some of the obstacles and/or concerns they have about the work they do. Areas might include – student debt, electronic medical records, IRB frustration. I would remind them that many great policies started with one idea. In that same vein, I would remind them to share ideas for improving things."