January 12, 2021

Join PPMD’s 20th Anniversary of Advocacy in Action

2021 marks the 20th Anniversary of the MD-CARE Act, landmark legislation that launched coordinated federal efforts to confront Duchenne and Becker muscular dystrophy through research, public health, and quality care initiatives. This congressionally directed federal…

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December 28, 2020

PPMD Advocates Secure Critical Congressional Funding for Duchenne Priorities in Year-End Package

Thanks to your advocacy at our annual spring Advocacy Conference supporting congressional funding of Duchenne research and care priorities, Congress has continued to fund federal agencies for this work and the President has signed off…

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December 16, 2020

PPMD Joins Letter Urging Inclusion of Neuromuscular Disease Community in Early COVID-19 Vaccine Distribution

PPMD is proud to have joined 20 patient organizations in signing letters led by the MDA to states and jurisdictions urging the inclusion of people living with neuromuscular diseases, such as Duchenne and Becker muscular…

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November 3, 2020

PPMD Urges Congress To Make It Easier for Providers To Treat Children From Other State Medicaid Programs

PPMD joined 22 prominent Organizations and Institutions in a letter urging Congress to enact the Accelerating Kids’ Access to Care Act (H.R. 5900 and S. 4717) by the end of the current Congress. This bipartisan…

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August 6, 2020

PPMD Signs Onto Letter Urging Congress to Protect Immunocompromised Patients During the Pandemic

PPMD joined dozens of patient organizations in a letter to Congress urging them to protect immunocompromised patients during the pandemic. Americans living with compromised immune systems have routinely taken precautions in order to avoid becoming…

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May 18, 2020

WATCH: Family Friday – End of the School Year & Looking Ahead

Family Friday: End of the School Year & Looking Ahead For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching…

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May 11, 2020

Telehealth Visits: Dos and Don’ts

Telehealth Visits: Dos and Don’t During our May 6, 2020 interactive webinar on telehealth appointments, our panelists, including physicians and a nurse from PPMD’s Certified Duchenne Care Centers, discussed their recent experience utilizing telehealth appointments with…

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May 8, 2020

WATCH: Family Friday – Sibling Relationships

Family Friday: Sibling Relationships For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching Family Fridays to discuss topics that…

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May 8, 2020

New Resource: COVID-19 & Duchenne Care Imperatives (Fact Sheet)

PPMD’s Care Team has created an easy-to-use fact sheet that provides high-level takeaways for the care of individuals with Duchenne and Becker muscular dystrophy during the COVID-19 pandemic, based on information from a recently published…

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May 7, 2020

WATCH: Making the Most of Your Telehealth Appointments

Webinar Recording: Making the Most of Your Telehealth Appointments During our May 6, 2020 interactive webinar on telehealth appointments, our guest panelists discussed what to expect, what questions to ask, and how to make the…

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