What does it mean to be "Rare"?
Join the IFCR on this webinar with special guest speakers Kelly Barnes and Ed Fennell as they discuss rare diseases and the global celebration of Rare Disease Day 2013. This year also marks the 30th anniversary of the Orphan Drug Act and the creation of NORD. You will learn about how the landscape of rare diseases has changed, what we have to look forward to, how IFCR and CDKL5 is involved, and how you can get involved in sharing your story with the world. Mr. Fennel will also share an exciting and ground-breaking initiative he is working on that will be an inspiration to all.
