June 17, 2019

Sharing Our Patient Experience

PPMD has been an active voice in rare disease to ensure that our community’s experience of Duchenne is collected meaningfully and integrated fully into all aspects of the drug development life cycle. Today we participated…

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June 3, 2019

PPMD Contributes to National Report on Caregiver Roles in Medical Product Development

For the last few years, PPMD has been working in partnership with the National Alliance for Caregiving, which has included the participation of PPMD’s Annie Kennedy on the planning committee of a national summit that…

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May 16, 2019

PPMD Signs on to Defense Health Research Letters

PPMD is proud to serve as a member of the Defense Health Research Consortium. Last week, letters were sent to both houses of Congress asking for their continued support for the critical and highly successful…

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May 14, 2019

PPMD Hosts Duchenne Clinical Outcomes Workshop

PPMD has been working for many years to engage critical policy makers and stakeholders within the regulatory and access environments.  While we have learned a great deal over the past two years as we have…

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May 3, 2019

Newborn Screening Saves Lives Reauthorization Act Introduced in House of Representatives

Yesterday, the Newborn Screening Saves Lives Reauthorization Act was introduced in the House of Representatives. PPMD is extremely proud to be a leading coalition voice in this milestone legislation aimed at eliminating preventable newborn deaths…

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April 11, 2019

79 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

As a result of 143 meetings with Members of Congress in Washington DC, and over 2,000 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne…

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March 22, 2019

Take Action before House and Senate Letters Close

Take Action before House and Senate Letters Close If you haven’t done so already please contact your Members of Congress – today – and ask them to support the FY 2020 Duchenne Appropriations Request. The…

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March 13, 2019

Updates from PPMD’s 2019 Gene Therapy Policy Forum

During PPMD’s Annual Advocacy Conference we had the opportunity to host a Gene Therapy Forum with expert clinicians, researchers, industry stakeholders, and government representatives taking part in the discussion. This meeting continues PPMD’s in-depth look…

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March 5, 2019

Action Alert! Continue Progress in the Fight Against Duchenne

Thanks to the work of our Duchenne community over the past two decades, Congress has regularly supported important programs and policies to advance research, public health, drug development, and other Duchenne priorities. To ensure that we…

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February 28, 2019

PPMD Leads Duchenne Community to Nation’s Capital for Annual Advocacy Conference

Parent Project Muscular Dystrophy (PPMD) heads to Washington, D.C., March 3–5, for their annual Advocacy Conference. Over 100 families are expected to join PPMD on Capitol Hill to help inform Members of Congress about the…

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