July 9, 2013: One Voice from Capitol Hill to the FDA

Tomorrow, Tuesday July 9th, is a big day for Duchenne advocacy. Advocates will be speaking about the high unmet medical need and urgency for treatments from the halls of Congress to the offices of the FDA.

PPMD will be meeting with individuals from FDA to include CDER, Division of Neurology, Office of Strategic Programs and Staff from the Office of Health and Constituent Affairs. Discussions will focus on accelerating treatments, what we have learned about the natural history of the disease, and the important of incorporating benefit risk considerations into the review process. Read Pat's latest blog outlining the meeting agenda.


We will report back on this important meeting later this week.

Happening at the same time on the same day, Rep. William Keating (D-MA) is hosting a Congressional Briefing on Duchenne and the FDA. All U.S. Senate and House offices are invited. Please call your U.S. Senators and your Representative and urge them to participate. We need their help to encourage FDA to act now to make lifesaving treatments available for patients.


Here are the details:

Date: Tuesday, July 9
Time: 1:30 PM
Location: 2456 Rayburn House Office Building
To reach your Senators and Representative, call the Congressional Switchboard at 202-224-3121.


Or visit www.parentprojectmd.org/findrep

July 9, 2013

One Voice. One Mission.

End Duchenne. 

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Comment by Michelle Meunier on July 8, 2013 at 5:33pm

Please do this , help save my son and all others facing this diseases . This is huge and you can make a difference ! END DUCHENNE !

Comment by Rebecca Nicole Parker on July 8, 2013 at 2:53pm

I think this is a good thing being done and i support everyone on your battles

Comment by David on July 8, 2013 at 11:33am

3 calls took me only 15 minutes!

Do it everyone! My family covers 4 states. How many can you cover? Don't put it off it is faster to call than email.

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