April 20, 2022

Calling All Advocates! The House Deadline for the FY23 Funding Letter Is Closing Friday!

Members of the House and Senate are working, right now, to submit their policy priorities for the annual spending bills that will fund the NIH, CDC, DOD, FDA, and other key federal agencies for 2023….

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March 17, 2022

The BENEFIT Act Gets Positive Response From Witness During Congressional Hearing

We are grateful to Representative Matsui for asking a question on the BENEFIT Act during today’s House Energy and Commerce Committee hearing entitled “The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight.” This…

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March 15, 2022

Breaking News! Congressional Hearing to Include the BENEFIT Act

We are truly in awe of our community’s amazing advocacy efforts last week! Not only have we received a number of inquiries and positive feedback from congressional offices, we are also making exciting progress toward…

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March 8, 2022

Action Alert! Support Progress in the Fight to End Duchenne

Urge your House and Senate Members to Support the FY 2023 Duchenne Funding Request & BENEFIT Act Today, during PPMD’s 2022 Advocacy Conference: Virtual Fly-In, over 260 advocates will be participating in 240+ virtual meetings…

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February 1, 2022

Join PPMD’s Virtual Advocacy Conference on March 8

Want to be part of history? Want to contribute to future progress in understanding, diagnosing, and treating Duchenne? Join PPMD’s Virtual Fly-In: Tuesday, March 8, 2022 Each year, PPMD ensures that the Duchenne community is…

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January 26, 2022

Save the Date for PPMD’s Upcoming Events!

PPMD is excited to announce our 2022 schedule of educational events, including PPMD’s Annual Conference (hybrid in-person & virtual meeting), End Duchenne Tour (both in-person and virtual stops), and Advocacy Conference (virtual). New this year, PPMD will host The Power of…

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January 21, 2022

PPMD’s Adult Advisory Committee (PAAC) in Action! 2021 Highlights & Looking Ahead

2021 was a busy and productive year for the PPMD Adult Advisory Committee (PAAC), PPMD’s advisory group composed of adult members of our Duchenne and Becker community. The PAAC successfully participated in local and federal…

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December 20, 2021

PPMD Signs Onto Letter to Congress in Support of Nomination for FDA Commissioner

PPMD joins over 50 organizations in a letter to Congress led by the EveryLife Foundation for Rare Diseases in support of President Biden’s nomination of Rob Califf for FDA Commissioner. Dr. Califf served as FDA…

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December 3, 2021

Updating the Community-led Duchenne Guidance for FDA – The Power of Us!

The update to the Community-led Duchenne Guidance for FDA is well underway and on track to be submitted to the agency in the beginning of 2022. As you know, in 2014, we came together as…

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November 5, 2021

PPMD joins 129 patient advocacy and provider organizations in a letter supporting critical medical research funding

Earlier this month, PPMD joined 129 patient advocacy and provider organizations in a letter to Congress urging them to enact the 2022 Defense Appropriations Act to ensure that the Defense Health Research Programs, including the Congressionally Directed…

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