Added by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments
Earlier this month, I testified on behalf of PPMD and the national Duchenne community before the Advisory Committee on Heritable Disorders in Newborns and Children – the U.S. federal advisory committee on newborn…
ContinueAdded by Annie Kennedy on November 20, 2017 at 6:30pm — No Comments
Call & Email Your Senators Today!
Both the House & Senate have now released their Tax Reform proposals, each with variations of similar policy impacts and changes that we feel an obligation to alert you to. It is anticipated that both Chambers will move this legislation swiftly and work to complete their votes during the week…
ContinueAdded by Annie Kennedy on November 15, 2017 at 1:46pm — No Comments
Progress! Today, Anthem issued a revised policy regarding Sarepta’s EXONDYS 51. In the revision, Anthem declared EXONDYS 51 medically necessary for the treatment of Duchenne muscular dystrophy when all of the following criteria are met:
Added by Annie Kennedy on November 9, 2017 at 9:58am — No Comments
Ever wished you could change the world – or at least your piece of it? Been looking for a way to engage a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts?
Hear first-hand what it's like to serve on the PPMD Adult Advisory Committee (PAAC) from current members…
Added by Annie Kennedy on November 8, 2017 at 2:30pm — No Comments
Call & Email Your Senators Today!
Yesterday, the Senate released the Tax Cuts and Jobs Act which includes many issues that we feel an obligation to alert you to.
While PPMD does not typically engage in legislation related to tax reform, this proposal (being referred to as…
ContinueAdded by Annie Kennedy on November 3, 2017 at 10:00am — No Comments
On October 25, PTC Therapeutics shared the news that the FDA had issued a Complete Response Letter regarding their application for ataluren, noting that FDA had stated that “an additional adequate and well-controlled…
ContinueAdded by Annie Kennedy on November 2, 2017 at 9:30am — No Comments
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