Reports Archives • World Duchenne

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ENMC Workshop #263 on females with dystrophinopathy

ENMC Workshop: Focus on female carriers of dystrophinopathy

13-15 May 2022, an ENMC workshop was organized on females carriers of dystrophinopathy. The lay summary is available in several languages.

Patient involvement in the development, regulation and safe use of medicines

New CHIOMS report on patient involvement in the development, regulation and safe use of medicines is now available for download.

#apaperaday special: PPMD meeting report on females with dystrophinopathy

Parent Project Muscular Dystrophy Females with Dystrophinopathy Conference, Orlando, Florida June 26 – June 27, 2019

#apaperaday special: How much dystrophin is needed for survival and function

How much dystrophin is needed for survival and function in Duchenne? Paper shows that little bits of dystrophin already can go a long way.

#apaperaday special: Needs of mothers caring for children with Duchenne

Today’s pick for the Women and Duchenne theme focuses on female caregivers (usually mothers) of Duchenne patients and their needs.

#apaperaday special: Why some Duchenne carriers have symptoms

Today's Women and Duchenne paper tries to elucidate why some female Duchenne carriers have symptoms and others have not.

Prof Aartsma-Rus' Clinical Trial Highlights of PPMD Conference 2022

Professor Aartsma-Rus shares her highlights of the PPMD Conference 2022 that was taking place June 23-26 in Phoenix Arizona.

Consensus Guidelines for Adult Duchenne Care

The Journal of Neuromuscular Diseases published the consensus guidelines for adult Duchenne care.

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care

During the second FAIR Data Meeting for Duchenne, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare.

ENMC workshop to refine recommendations for female carriers

The aim of this ENMC workshop were to raise priority and need for clinical and research focus on DMD female carriers. Report now available.

Meeting on the use and development of wearables and other digital outcomes for Duchenne

The World Duchenne Organization organized a meeting about the use of wearables, and other digital outcome measures, in Duchenne and Becker Muscular Dystrophy (DMD and BMD).

Describing medical terms in medicines use

The European Medicines Agency (EMA) published an online resource describing medical terms in medicine use related to side effects.

WDO Webinar 6: Duchenne & Vaccines

During the WDO Member Meeting on February 28, the World Duchenne Organization invited Dr. Erik Niks to present a webinar…

Will the COVID-19 vaccine impact my possibility to have gene therapy?

Gene therapy uses viruses to deliver a micro-dystrophin gene or an exon skipping gene. COVID-19 is a virus. If I…

Report: World Muscle Society (WMS) 2020 International Congress

This year the 25th edition of the World Muscle Society (WMS) 2020 International Congress, a congress where the worldwide important…

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. 2021 March…

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…

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ENMC Workshop: Focus on female carriers of dystrophinopathy

Patient involvement in the development, regulation and safe use of medicines

#apaperaday special: PPMD meeting report on females with dystrophinopathy

#apaperaday special: How much dystrophin is needed for survival and function

#apaperaday special: Needs of mothers caring for children with Duchenne

#apaperaday special: Why some Duchenne carriers have symptoms

Prof Aartsma-Rus' Clinical Trial Highlights of PPMD Conference 2022

Consensus Guidelines for Adult Duchenne Care

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care

ENMC workshop to refine recommendations for female carriers

Meeting on the use and development of wearables and other digital outcomes for Duchenne

Describing medical terms in medicines use

WDO Webinar 6: Duchenne & Vaccines

Will the COVID-19 vaccine impact my possibility to have gene therapy?

Report: World Muscle Society (WMS) 2020 International Congress

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

Care in times of COVID

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

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

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

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

WDO Webinar 1: COVID-19 and DMD/BMD

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

The position of neuromuscular patients in Shared-Decision-Making

VISION-DMD Working Group Meeting

Symposium On Muscle-Bone Interaction In DMD

Highlights on Data sharing for Duchenne meeting

WDO Member Meeting 2019

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

PPMD Publishes 10 Year Registry Report

Warning on stem cell therapy in Duchenne

Adult Life & Duchenne

ENMC workshop to refine recommendations for female carriers