August 3, 2023

CDCC Spotlight: Children’s Hospital Colorado

Empowering Adults  Transitioning from pediatric to adult care can feel monumental and overwhelming. Finding new doctors, establishing rapport and trust, and taking control of your health care decisions while approaching adulthood is daunting. Moreover, “adulting”…

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August 2, 2023

PPMD Publishes 15 Year Registry Report 

PPMD is excited to announce the release of the 15 Year Registry Report. This report is the culmination of data provided by registrants in The Duchenne Registry, as well as collaborative work with expert clinicians…

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August 1, 2023

PPMD Gathers Experts for Adult Care & Transition Meeting Ahead of 2023 Annual Conference

Duchenne & Becker Adult Care & Transition Meeting Recap Ahead of PPMD’s 2023 Annual Conference in June, around 40 healthcare professionals from around the country gathered for a one-day meeting to discuss an important topic…

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July 31, 2023

New Clinical Experiences Survey

PPMD strives to ensure that every patient with Duchenne and Becker muscular dystrophy receives the best care possible. An important part of PPMD’s certification and continued maintenance of Duchenne Care Centers around the country is…

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July 20, 2023

CDCC Spotlight: Nemours Children’s Hospital

A Gold Standard of Collaboration  PPMD’s Certified Duchenne Care Centers (CDCC) are clinics of excellence, demonstrating comprehensive and coordinated care for individuals living with Duchenne and Becker muscular dystrophy. Dr. Mena Scavina, Pediatric Neurologist and…

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July 14, 2023

WATCH: ELEVIDYS: What This Means for You and Your Family (Webinar Recording)

In case you missed it, PPMD was joined by Drs. Russ Butterfield of University of Utah and Sue Apkon of Colorado Children’s earlier this week to talk through some of the common questions around the…

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June 22, 2023

FDA grants approval via accelerated approval pathway to ELEVIDYS: First-ever gene therapy for individuals with Duchenne ages 4-5

Today is an incredible milestone for the entire Duchenne community. It is a first step. But a huge step forward. Today, the FDA has granted accelerated approval to ELEVIDYS (delandistrogene moxeparvovec-rokl), a micro-dystrophin gene therapy…

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June 20, 2023

PPMD Announces Pediatric Certified Duchenne Care Center at Norton Children’s Hospital

Today Parent Project Muscular Dystrophy announced the expansion of its renowned Certified Duchenne Care Center (CDCC) Program with the certification of the clinic at Norton Children’s in Louisville, KY. This is an exciting step for…

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June 19, 2023

PPMD publishes results of study to understand Duchenne patients’ and caregivers’ perspectives on corticosteroids

Earlier this month, the publication, A Mixed-Method Study Exploring Patient-Experienced and Caregiver-Reported Benefits and Side Effects of Corticosteroid Use in Duchenne Muscular Dystrophy, was accepted into the Journal of Neuromuscular Diseases. Background  PPMD has led…

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June 16, 2023

PPMD Announces Pediatric Certified Duchenne Care Center at Boston Children’s Hospital

Today Parent Project Muscular Dystrophy announced the expansion of our renowned Certified Duchenne Care Center (CDCC) Program with the certification of Boston Children’s Hospital. This is an exciting step for the CDCC Program as it…

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