Events Archives • World Duchenne

Showing all 30 results

International training for Duchenne patient advocates

This year, the 6th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and…

Women in Duchenne

Why for World Duchenne Awareness Day 2022, women are in the spotlight. In Duchenne and Becker Muscular Dystrophy the spotlight…

3rd International FAIR data 'visiting' for Duchenne & Other Rare Diseases

How will FAIR optimize the use of patient data? The 3rd International FAIR data 'visiting' for Duchenne & Other Rare Diseases is November 22.

3rd International Muscle-Bone Interaction in Duchenne Muscular Dystrophy Symposium

Online symposium November 7 & 14: Moving beyond the 2018 minimum international standards of care for osteoporosis management.

2nd International Conference on Rare Diseases

The 2nd International Conference on Rare Diseases (March 1-2) is themed “The Balancing Act between Equity and Sustainability".

DMD community celebrates successful Duchenne Patient Academy 2021

Last week, the 5th edition of Duchenne Patient Academy has taken place virtually. More than 75 Duchenne and Becker MD patient advocates…

VISION-DMD End Event: Vamorolone Clinical Trial Results

VISION-DMD aims to develop a safe, effective and affordable therapy for Duchenne. This event presents the outcomes of the Vamorolone studies.

Applications open for Duchenne Patient Academy 2021

At Duchenne Patient Academy, DMD and BMD patient advocates receive training to build a strong base for current and future global advocacy.

ONLINE EVENT: ADULT LIFE & DUCHENNE

The recording from the online event 'Adult Life & Duchenne' is now available for rewatching. Interpretation available in multiple languages.

World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne

All World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

Online event on Adult Life & Duchenne

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne.

EURORDIS Black Pearl Awards 2022

Nominations for the EURORDIS Black Pearl Award 2022 are now open!

Adult Life & Duchenne

On September 7, the World Duchenne Organization will be hosting an online event where experts share their stories and experiences surrounding DMD/BMD and adult life.

EPF Congress 2021: Digital Transformation of Healthcare

From October 26 - 29, the European Patients’ Forum (EPF) is organizing a congress on the digital transformation of healthcare.

First International Neonatal Screening Day

Today is the First International Neonatal Screening Day. Early diagnosis is of great importance for everybody with medical problems.

Duchenne Care Conference 2021 successfully concluded

During the Duchenne Care Conference, top experts share their experience on specific topics of Duchenne (and Becker) care.

Duchenne Ukraine announces international children’s drawing competition

Duchenne Ukraine opens an international children's drawing competition to discover and celebrate talented children living with Duchenne.

World Duchenne Awareness Day 2021

September 7 is World Duchenne Awareness Day. This year's theme that deserves more attention is ‘Adult Life & Duchenne’.

Dr Imelda de Groot Award

During the Duchenne Care Conference, taking place June 1-4 online, the Dr Imelda de Groot Award was announced. The Award was revealed by Elizabeth Vroom, chair of the World Duchenne Organization.

World Duchenne Awareness Day 2021 theme announcement

On World Duchenne Awareness Day, we raise awareness for Duchenne and Becker Muscular Dystrophy. The 2021 theme is Adult Life & Duchenne.

Duchenne Care Conference 2021

Online Duchenne Care Conference June 1 - 4 for WDO Members where global experts share their knowledge on specific care topics.

Working Group for Newborn Screening in Duchenne

The World Duchenne Organization starting a working group to create tools and resources to advocate for newborn screening in Duchenne.

Summer Training Course for Young Patient Advocates (STYPA)

Online training course for young patient advocates to receive training and guidance to set up their own patient advocacy effort.

Meeting on Data Sharing for Duchenne

Step by Step towards Duchenne FAIR data In 2019, we made a commitment towards making Duchenne data suitable for sharing…

International congress on the effects of COVID-19 on people with rare diseases

On the second week of November, an international conference will take place virtually in order to present the patient registry…

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 Patient Academy 2020: Applications now open

We are delighted to announce that Duchenne Patient Academy, supported by the World Duchenne Organization, is returning for the fourth…

Attention to mental well-being in DMD/BMD families

Living with Duchenne and Becker muscular dystrophy (DMD and BMD) has a profound impact on the lives and mental health…

Duchenne and the Brain

This conference has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement no…

#WDAD2020: Together we are stronger

The current Corona pandemic is profoundly impacting our daily lives. It changes the way we spend time, and it alters…

Go back to all news

Sections

Results

News

International training for Duchenne patient advocates

Women in Duchenne

3rd International FAIR data 'visiting' for Duchenne & Other Rare Diseases

3rd International Muscle-Bone Interaction in Duchenne Muscular Dystrophy Symposium

2nd International Conference on Rare Diseases

DMD community celebrates successful Duchenne Patient Academy 2021

VISION-DMD End Event: Vamorolone Clinical Trial Results

Applications open for Duchenne Patient Academy 2021

ONLINE EVENT: ADULT LIFE & DUCHENNE

World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne

Online event on Adult Life & Duchenne

EURORDIS Black Pearl Awards 2022

Adult Life & Duchenne

EPF Congress 2021: Digital Transformation of Healthcare

First International Neonatal Screening Day

Duchenne Care Conference 2021 successfully concluded

Duchenne Ukraine announces international children’s drawing competition

World Duchenne Awareness Day 2021

Dr Imelda de Groot Award

World Duchenne Awareness Day 2021 theme announcement

Duchenne Care Conference 2021

Working Group for Newborn Screening in Duchenne

Summer Training Course for Young Patient Advocates (STYPA)

Meeting on Data Sharing for Duchenne

International congress on the effects of COVID-19 on people with rare diseases

Report: World Muscle Society (WMS) 2020 International Congress

Duchenne Patient Academy 2020: Applications now open

Attention to mental well-being in DMD/BMD families

Duchenne and the Brain

#WDAD2020: Together we are stronger

Warning on stem cell therapy in Duchenne

Adult Life & Duchenne

ENMC workshop to refine recommendations for female carriers