With deficit reduction remaining a top priority in Congress and a $1.2 trillion spending reduction on the horizon, 2012 will be a critical year to protect Duchenne research and public health priorities. For this to happen, we need your voice on Capitol Hill now more than ever before. Whether that be by joining us in Washington at the Annual Advocacy Conference or advocating from home by contacting members via phone and email, we need your voice! View a list of ways you can get active in 2012.

Thanks to the work of our Advocates, we had a very successful 2011. Federal funding for Duchenne initiatives is projected to be the same amounts as last year for both the Center for Disease Control (CDC) and the National institutes of Health (NIH). We continue to make strides and need your help to make even more progress in 2012.

For over ten years, the Duchenne community has worked hard to leverage money into translational research, and these efforts have yielded over $200 million federal dollars into Duchenne research and education initiatives. This in turn has leveraged even more private money into the field. We must have a robust private/public system working together to advance therapies for Duchenne.

What we're fighting for this year

This year, we plan to once again fight to protect funding at all relevant agencies, as well as, pursue an FDA strategy to advance the development of therapies for Duchenne.  It is a new era for Duchenne, one where regulatory issues are at the forefront.  Understanding and responding to these issues will be essential for progress.  Over the last 10 years, our advocacy efforts have been instrumental in advancing research, incentivizing industry and accelerating clinical research and it is because of this collective effort that we are entering a new phase in our discussions.

This year, Congress is expected to incorporate proposals to improve regulatory science and advance development of drugs for rare diseases in upcoming Prescription Drug User Fee Act reauthorization legislation (PDUFA). PDUFA allows for the FDA to collects fees from drug manufacturers to, in turn, improve and expedite the approval process for drugs. The fees collected are used by the FDA to increase efficiency and timeliness with review of license application and increase their medical and scientific staff capability.

PPMD is closely monitoring Congress' and the Agency's proposals for advancing drug development of drugs for rare diseases, and in the coming weeks will determine whether there is a proposal in play that is appropriate for our endorsement, or we may choose to develop and advocate for our own proposal that better meets the needs of our community.

Learn more, join the webinar

On January 25th, PPMD and B&D Consulting will be holding an Advocacy webinar on the history of the Prescription Drug User Fee Act (PDUFA), the implications of its reauthorization, and how it all applies to us, the Duchenne community. Be sure to mark your calendars http://www.parentprojectmd.org/site/PageServer?pagename=Connect_new...

Join us at our Annual Advocacy Conference!

The PPMD Annual Advocacy Conference is right around the corner (February 26th-28th), we hope you will consider joining us on the Hill.

There is much work to be done on Capitol Hill and we need your voice to do it!  We welcome your thoughts and feedback.

WWW.PARENTPROJECTMD.ORG/GETACTIVE

 


Ryan Fischer, Director of Outreach & Advocacy
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