advocacy

September 4, 2024

Introducing PPMD’s Newborn Screening Action Center: A Hub for Advocacy and Education

We are thrilled to announce the launch of PPMD’s Newborn Screening Action Center, a powerful resource designed to both educate and empower you as we work to ensure that every baby, in every state, has…

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Congress Passes FAA Reauthorization Featuring Monumental Accessibility Improvements

This week marked a significant milestone as Congress successfully passed the bipartisan Federal Aviation Administration (FAA) reauthorization, officially known as HR 3935, the Securing Growth and Robust Leadership in American Aviation Act. This legislation, now…

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WATCH: Community Progress in Duchenne Newborn Screening (Webinar Recording)

PPMD, in collaboration with the Muscular Dystrophy Association (MDA), the EveryLife Foundation for Rare Diseases, and the Little Hercules Foundation (LHF), recently hosted a webinar on the background, history, and next steps for Duchenne Newborn…

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PPMD Launches First State-Specific Duchenne Advocacy Day in Illinois

PPMD is proud to announce the launch of our first state-specific Duchenne Advocacy Day in Illinois! This initiative marks a significant milestone in PPMD’s efforts to advance legislative progress for Duchenne at the state level….

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Fiscal Year 2024 Appropriations Package Signed Into Law, Including Critical Funding for Duchenne and Becker

At the beginning of March, PPMD’s Advocacy Conference brought together more than 120 advocates from 26 different states in Washington, D.C. to advocate on behalf of the Duchenne and Becker community. This past weekend, the…

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PPMD’s 2024 Advocacy Conference Brings Together Community to Support Progress in Fighting for Every Future

Earlier this month, more than 120 PPMD advocates – people with Duchenne and Becker, parents, siblings, grandparents, and other family members and friends – from 26 different states gathered in Washington, D.C. to urge legislators…

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PPMD Celebrates 30th Anniversary and Three Decades of Progress with Annual Advocacy Conference

Over the past three decades, PPMD has driven Congress to enact legislation that has transformed federal public health, research, therapy development and access policies to bring us closer to ending Duchenne. This advocacy work has resulted…

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February 27, 2024

Breaking News: Rare Disease Day Congressional Hearing to Address the BENEFIT Act

On Thursday, February 29th, Rare Disease Day, the House Energy and Commerce Committee will hold a congressional hearing, titled “Legislative Proposals to Support Patients with Rare Diseases” at 10:00 am ET. This hearing will review…

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December 11, 2023

Register Now for PPMD’s 2024 Advocacy Conference

Join us in Washington, DC, March 3–5, 2024, as we continue to fight for every future. Each year, PPMD ensures that the Duchenne community is at the forefront of the hearts and minds of Congressional…

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October 31, 2023

WATCH: Advocating for Access – Overview of Medicaid DUR and P&T Meetings (Webinar Recording)

During October’s Advocating for Access webinar, the PPMD and Little Hercules Foundation teams dug into what happens after a drug is approved with regard to how state Drug Utilization Review (DUR) boards assess how a…

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