October 26, 2022

Duchenne UK and PPMD Announce 2022 Joint Call for Therapeutic Projects

Parent Project Muscular Dystrophy (PPMD) and Duchenne UK, a UK-based patient organization, are pleased to announce the launch of their 2022 Joint Call for Therapeutic Projects inviting research proposals for submission and review. Up to $1…

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October 20, 2022

Save the Date for PPMD’s 2023 Educational Events!

PPMD is excited to announce our 2023 schedule of educational events, including PPMD’s Annual Conference, End Duchenne Tour, and Advocacy Conference. Featuring a variety of in-person and hybrid events, we look forward to bringing our community together to…

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October 17, 2022

The Duchenne Registry has three new surveys!

The Duchenne Registry, powered by PPMD, is the largest, most comprehensive patient-reported registry for Duchenne and Becker muscular dystrophy. With over 5,000 registrants, the Registry connects Duchenne and Becker patients with actively recruiting clinical trials…

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October 6, 2022

PPMD Submits Updated Community Draft Guidance for Duchenne, Becker, and Related Dystrophinopathies to FDA

An exciting update to the revised community-led Duchenne Guidance for FDA is that it has been officially submitted to the agency! As you know, this Community Draft Guidance will serve as an update to the…

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September 27, 2022

Understanding Duchenne Gene Therapy Trials & Results Data

Understanding Gene Therapy Trials & Results Data At PPMD, one of our goals is to help families navigate the concerns and decisions that are part of Duchenne. Some of the most common questions we get…

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September 16, 2022

ImagingNMD: Expanding Natural History Studies in Duchenne, Becker, and Carriers

Are you interested in contributing to clinical research to understand how muscle changes over time in Duchenne, Becker, and manifesting carriers? University of Florida’s ImagingNMD group has several studies currently recruiting participants to better understand…

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September 7, 2022

The Duchenne Registry: Advancing Research for Female Carriers

In the past, there has not been a great deal of research focused on female carriers, but this is changing. The Duchenne Registry, started by PPMD in 2007, has always collected data on female carriers. In…

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August 16, 2022

Eliminating the Diagnostic Odyssey: PPMD Studies Published Featuring Family & Care Provider Perspectives

PPMD has long supported efforts to reduce the age of diagnosis, eliminate the diagnostic odyssey, and make diagnosis equitable in Duchenne. Most recently, we reached an incredible milestone with the submission of a nomination package…

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August 16, 2022

2022 #PPMDConference Presentations

2022 PPMD Annual Conference Presentations JUNE 23-26, 2022 | Scottsdale, AZ Thank you to everyone who joined us for PPMD’s 2022 Annual Conference, whether you attended in person in Scottsdale, AZ, or virtually from anywhere…

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June 30, 2022

PPMD Submits RUSP Nomination Package for Duchenne Muscular Dystrophy

PPMD’s Duchenne Newborn Screening efforts have reached an incredible milestone. Today, PPMD submitted a nomination package to add Duchenne to the Recommended Uniform Screening Panel (RUSP), requesting Duchenne be a condition recommended for nationwide Newborn…

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