ONLINE EVENT: ADULT LIFE & DUCHENNE
The recording from the online event 'Adult Life & Duchenne' is now available for rewatching. Interpretation available in multiple languages.
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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
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.
Register for 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…
WDAD 2020: Duchenne and the brain
Every year on September 7, we celebrate World Duchenne Awareness Day. On this day, we raise awareness for Duchenne and…
ECRD 2020 Online Conference – registration opened
EURORDIS, together with Orphanet and Inserm are hosting their 10th European Conference on Rare Diseases & Orphan Products (ECRD) on…
Autism in Duchenne muscular dystrophy: how to detect and what to do
Thursday April 2 is World Autism Awareness Day. Then, the world raises awareness about people with Autism Spectrum Disorder (ASD)…
Holiday wishes from WDO
2019 was a year where things have been given and taken from us. With this community letter, we hope to…
Duchenne Patient Academy trains 80 patient advocates from 37 countries
Three years ago, the first Duchenne Patient Academy (DPA) was launched in Athens, Greece. This global patient advocacy initiative was…
WDO Member Meeting 2019
The first WDO Member Meeting of 2019 was a great success. Over 50 participants from 24 countries gathered on February…
WDO Member Meeting 2019
During the annual Duchenne Conference organized by Parent Project Onlus that takes place in Rome on Feb 15-17, the World Duchenne Organization hosts a meeting…
Duchenne Data Foundation presents: Duchenne Academy
Join patient groups, experts and companies from different countries of the world over 4 days at the Duchenne Academy Friday…
