Monday, September 22, 2014

Video Stories Speak to FDA

At the recent RARE Patient Advocacy Summit, a parent from the Duchenne muscular dystrophy community, Christine McSherry (@fundDuchenne), stood up and offered a valuable tip on taking home video, on your iPhone for example, to document your personal experiences with a drug, in order to be able to effectively share your perspective with the FDA (Food and Drug Administration), who review new drugs for the United States market. She made the compelling case:
"Be nimble, be novel, and be innovative. Think about what's really important to you and how you capture that. And think of it before. Don't make our mistake of not taking the video before. We have the technology right here at our hands but we don't always necessarily use it the way that we should."
-Day 2 livestream coverage, story at 02:09:16

For those unable to attend the event in person, Global Genes has now made the two day summit videos available online.

Checkout the animation Living with Duchenne Muscular Dystrophy, by the Takin' Charge Project in the United Kingdom, packed with great advise for young people living with Duchenne from boys with Duchenne.

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