Capitol Hill and the Rare Disease Community

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."