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The MENA Organization for Rare Diseases Annual Meeting is held in Dubai from March 3-5, 2023. The region's largest rare diseases event.
Duchenne Patient Academy 2022 successfully concluded
Duchenne Patient Academy 2022 provides training and education opportunities for people involved in Duchenne and Becker MD patient advocacy.
Submit a Poster for Duchenne Patient Academy 2022
Do you have an innovative project related to the Duchenne field? Submit an E-Poster for Duchenne Patient Academy 2022!
Meeting on FAIR Data ‘Visiting’ for Duchenne and other Rare Diseases
The World Duchenne Organization is pleased to announce that the 3rd International FAIR data ‘visiting’ for Duchenne & Other Rare…
Duchenne Patient Academy 2022 Applications Now Open
Duchenne Patient Academy 2022 Applications Now Open. Help drive the international advocacy agenda for people living with dystrophinopathies.
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.
Duchenne Care Conference 2022: Adult Duchenne Care
During the Duchenne Care Conference 2022, top experts share their experience on specific topics of Adult Duchenne Care.
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…