November 28, 2018

PPMD Designates University of Virginia Children’s Hospital a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named University of Virginia Children’s Hospital to be the 22nd clinic to be named a Certified Duchenne Care Center PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services…

Learn More

November 19, 2018

PPMD 2018 Annual Conference – Polling Report

The 2018 PPMD Annual Conference provided a unique opportunity to conduct live polling of those joining us, including those joining in person and those joining virtually from home. The following report (download) provides the data…

Learn More

November 18, 2018

WATCH: Engaging Families in Care Guideline Development – Webinar Recording

On Wednesday, November 14, PPMD hosted a webinar on patient-centeredness of recently published endocrine care guidelines for Duchenne. Researchers from RAND Health Care and PPMD shared the results of their project that developed a new online…

Learn More

November 6, 2018

PPMD Designates Children’s Hospital of Wisconsin a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named the Neuromuscular Disorders Program at Children’s Hospital of Wisconsin to be the 21st clinic to be named a Certified Duchenne Care Center PPMD’s Certified Duchenne Care Center Program,…

Learn More

November 1, 2018

PPMD Designates Children’s National Health System a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Children’s National Health System our 20th Certified Duchenne Care Center. PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people living with Duchenne, began…

Learn More

October 31, 2018

WATCH: An Update on Corticosteroids – Webinar Recording

PPMD and Dr. John Brandsema hosted a webinar on October 24, 2018 to discuss the current guidelines for steroid use in Duchenne muscular dystrophy, emerging data, and best practices. If you missed the live event,…

Learn More

October 9, 2018

2018 World Muscle Society Update

Last week, PPMD’s Founding President and CEO, Pat Furlong and our SVP of Research Strategy, Abby Bronson attended the annual World Muscle Society (WMS) meeting, this year in Mendoza, Argentina. Pat and Abby have provided…

Learn More

October 1, 2018

New Duchenne/Becker ICD Code in Effect Today — G71.01

Today at 12:01 AM  – while most of us were sound asleep – the International Classification of Diseases (ICD) code for Duchenne/Becker muscular dystrophy changed.  Previously, Duchenne muscular dystrophy was classified among a broad category…

Learn More

September 26, 2018

PPMD Continues Commitment to Duchenne Newborn Screening through Launch of Pilot in New York State

– PPMD Continues Commitment to U.S. Duchenne Newborn Screening Program – For the last 4 years, PPMD has been leading a national effort to build a Newborn Screening (NBS) infrastructure for Duchenne in the U.S. aimed…

Learn More

September 18, 2018

Your Duchenne Registry Data: Researchers Find Different Mutations Have Varying Effects on Progression

As curators of The Duchenne Registry, we are frequently asking you to submit your genetic test report to the Registry. You may often wonder why we need the actual laboratory report, and why we are…

Learn More