Reports Archives • World Duchenne

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Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

The recent BIND Webinar brought together patients, caregivers, and researchers with a shared interest in advancing our understanding of brain…

White Paper Released: Newborn Screening for Duchenne Muscular Dystrophy – The Time is Now

The World Duchenne Organization (WDO) is pleased to announce the release of a comprehensive White Paper titled ‘Newborn Screening for Duchenne Muscular Dystrophy: The Time is Now’ was published today.

Six boys with Duchenne are posing with the materials they have received: wheelchairs, pillows, supplements, and other humanitarian aid.

DMD Emergency Program Provides Aid to Duchenne Families in Ukraine

The DMD Emergency Program announces the successful delivery of humanitarian aid to people living with Duchenne and Becker in Ukraine.

WDO Member Meeting 2023: A Recap of the Day

The WDO Member Meeting 2023 focused on emergencies in Duchenne and was a platform for sharing experiences, learning, and inspiring others.

Clinical trials in DMD: Ten years on, what have we learned?

Clinical trials in DMD: Ten years on, what have we learned? A lay report of the ENMC Workshop discussion of participants’ experiences.

The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

The recording and slides of the 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases are now available.

EMA Recommendations: Facilitating Decentralized Clinical Trials in the EU

The European Medicines Agency (EMA) published recommendations that aim to facilitate the conduct of decentralized clinical trials (DCTs).

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

January 31, the European Medicines Agency hosts a webinar on patient involvement in the development, regulation and safe use of medicines.

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…

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Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

White Paper Released: Newborn Screening for Duchenne Muscular Dystrophy – The Time is Now

DMD Emergency Program Provides Aid to Duchenne Families in Ukraine

WDO Member Meeting 2023: A Recap of the Day

Clinical trials in DMD: Ten years on, what have we learned?

The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

EMA Recommendations: Facilitating Decentralized Clinical Trials in the EU

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

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

Road to independence: Documentary about young people with NMD

Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

Applications now open for Duchenne Patient Academy 2024