Reports Archives - World Duchenne

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Duchenne and the brain: What is known from animal models?

We all know that in Duchenne and Becker muscular dystrophy, the muscles are affected. However, there are also dystrophin variants…

Care in times of COVID

Over the past months, we have been receiving an increasing number of questions about the risks of returning, or not…

Caring for people with Duchenne, Becker and other MD's during COVID-19

COVID-19 has shaken up the healthcare world. Delivering clinical care to people affected with Duchenne, Becker and other muscular dystrophies…

Webinar 4: how to manage COVID-19 induced stress and anxiety

Even under the best circumstances, it’s hard to take care of a child with a chronic disease. It’s even harder…

WDO Webinar 3: how to prepare for potential DMD/BMD patients with COVID-19

What is the best we can do for our Duchenne and Becker patients? We all wish to provide the best…

WDO Webinar 2 on COVID-19: on steroids, supplements and possible treatments

In weekly WDO Webinars, we ask DMD experts and clinicians to share their knowledge. Each time, we are collecting the…

WDO Webinar 1: COVID-19 and DMD/BMD

This Saturday, the World Duchenne Organization hosted a webinar to facilitate the questions to clinicians on the current novel Coronavirus…

Live/ COVID-19: Coronavirus and Duchenne & Becker muscular dystrophy

A regularly updated news feed on the COVID-19 outbreak with relevant information for Duchenne and Becker muscular dystrophy. July 2…

The position of neuromuscular patients in Shared-Decision-Making

In 2018, the European Neuromuscular Centre (ENMC) held a special meeting dedicated to the position of neuromuscular patients in Shared-Decisino-making…

VISION-DMD Working Group Meeting

Athens, 6 and 8 December 2019 – The Vision-DMD Working Group Meeting organized by the World Duchenne Organization, preceded the…

Symposium On Muscle-Bone Interaction In DMD

21st June 2019 St Virgil Conference Centre, Salzburg, Austria On the 21st of June 2019 a symposium on muscle-bone interaction in…

Highlights on Data sharing for Duchenne meeting

21-22 March 2019, Level Eleven – Amsterdam, the Netherlands Data is one of the few technologies that becomes of greater…

WDO Member Meeting 2019

The first WDO Member Meeting of 2019 was a great success. Over 50 participants from 24 countries gathered on February…

Update on Duchenne UK’s survey and workshop to discuss the use of re-purposed or off label medicines

Last month, Duchenne UK hosted a workshop to discuss the use of re-purposed or off label medicines. We conducted a survey…

PPMD Publishes 10 Year Registry Report

PPMD is excited to announce the release of the Ten Year Registry Report. This report is the culmination of data…

PPMD Duchenne Compass Meeting report

The Duchenne Patient-Focused Compass Meeting was held as part of FDA’s Patient-Focused Drug Development (PFDD) initiative. As an externally led…

PPMD Meeting Update: Inflammation in Duchenne

Last month, PPMD convened a day and half meeting – Inflammation in Duchenne: Current and New Treatment Strategies – to…

AAV Microdystrophin gene therapy for DMD

With the courtesy of European Neuromuscular Centre (ENMC), please find here the lay reports of the ENMC workshops related to…

Updated Family Guide for DMD

Duchenne Muscular Dystrophy (Duchenne) is a rare genetic (inherited) disease defined by muscle weakness that gets progressively worse over time…

Duchenne Care Conference

Friday September 7, countries all over the world organize events concerning the topic Standards of Care for Duchenne Muscular Dystrophy.…

Share4Rare Patient-Powered Co-Design Workshop

Brussels, Belgium. This Monday, another successful Share4Rare workshop was held in Brussels, organized by The Synergist. With participants from over 6…

Bone Protective Therapy in Duchenne MD

With the courtesy of European Neuromuscular Centre (ENMC), please find here the lay reports of the ENMC workshops related to…

Duchenne Parent Project congress “Duchenne and the brain”

The annual congress of the Duchenne Parent Project, the Netherlands, was this year held in Heeze, the Netherlands and focused…

First WDO Community Advisory Board meeting

The World Duchenne Organization is happy to announce their first Duchenne Community Advisory Board Meeting (under the Eurordis EUROCAB initiative) from…