Wednesday Morning at 10 am, the Senate Health, Education, Labor and Pensions Committee will be holding a hearing titled "Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures." The EB community is extremely fortunate to be personally represented at this hearing. The father of a boy with RDEB (what Ella has) will be testifying before the Committee and sharing details of their life with EB. This is an incredible opportunity! EB will be the only disease specifically represented at this hearing.
Full Committee Hearing - Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures
Committee: Senate Committee on Health, Education, Labor, and Pensions
Date: Wednesday, July 21 2010, 10:00 AM
Place: SD-430
I know that most people don't live in the DC area and won't be able to attend the hearing, but you can watch it via webcast at: http://help.senate.gov/hearings/hearing/?id=d132692d-5056-9502-5da9-23c77808a20f
It should be available one the webiste for a few days after the hearing, so if you're working during the day you'll be able to watch it at night.
Like I said, this is a great opportunity to raise awareness for EB and hopefully advance research for the future. Ella and I will be there, along with several other EB families. I'll be sure to fill you in on the details.
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