Yesterday, I received a couple of emails from local support group member and volunteer Lily Shih about the NIH and FDA Rare Disease Day that she attended nearly a month ago. None of the disorders in our local support group were discussed specifically. Lily shared the following.
From Lily Shih:
I found that the NIH and the FDA have put recordings from Rare Disease Day on their websites! Isn’t technology grand?!
NIH Rare Disease Day
Feb 29, 2012 Recordings
This day was more catered towards scientists and physicians. Most presentations were hard to follow along.
FDA Patient Advocacy Day
Mar 1, 2012 Recordings
This day was very organized and extremely helpful to advocates with useful info. I recommend watching these videos.
The FDA day was especially helpful. If you watch the first video with the acting director, Dr. Rao, you’ll see how the day unfolded and know which presentation will be of interest to you. You can learn about the history of the FDA, their org chart, their drug review process, what the Dept. pf Orphan Disease is all about, and hear first hand how they WANT to work with patient advocates. Very impressive, that Dr. Rao!