Annie Kennedy's Blog – October 2015 Archive (2)

PPMD Urges Senate to Move Forward on #Cures2015 Innovation for Healthier Americans Bill

Yesterday, I had the distinct privilege of representing PPMD and our Duchenne community as I sat before a full room of Senate staffers and congressional aides in the Dirksen Senate office building. Our goal was to urge them to press forward on the Innovation for Healthier Americans bill (also referred to as the ‘Innovation…


Added by Annie Kennedy on October 9, 2015 at 12:00pm — 1 Comment

Industry partners receive FDA’s Pediatric Rare Disease Designation – and YOU helped make it possible!

In the last few weeks we’ve heard the news from several companies working to develop therapies for Duchenne that they have received Rare Pediatric Disease Designations from the FDA. Santhera, Sarepta, Catabasis, and Biomarin.


We as a community have celebrated this news. But what does it actually mean?


And did you know that it…


Added by Annie Kennedy on October 7, 2015 at 4:30pm — No Comments

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