What to expect at the FAIR Training Webinar 2025
What to expect at the FAIR Training Webinar 2025 With the agenda now finalized, the first part of the FAIR…
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FAIR Training Program 2025 - 2027: Registration now open for Part 1
Advancing FAIR Data Practices for Rare Disease Research Part 1 (2025) of the FAIR Training Program is now open…
Duchenne Care Conference 2025 highlights advances in clinical management of DMD and BMD
The Duchenne Care Conference 2025, organized by the World Duchenne Organization, took place virtually on May 26–27, 2025. It gathered…
BIND Webinar: Understanding the role of dystrophin in the brain
We are inviting you to join the BIND Patient Community Webinar, taking place on Monday, September 23 at 18:00 CEST.…
Duchenne Care Conference 2024 successfully concluded, recordings available
The recordings of Duchenne Care Conference 2024 are now available. It provides a platform for sharing the latest updates on Duchenne MD care.
Successful Conclusion of Duchenne Patient Academy 2023
The World Duchenne Organization and Duchenne Data Foundation are happy to announce the successful conclusion of Duchenne Patient Academy 2023.…
Announcing the Winner of the Dr. Imelda de Groot Award 2023
We are thrilled to announce the winner of the 'Dr. Imelda de Groot Award' for 2023. This annual accolade, initiated…
Applications Now Open for Duchenne Patient Academy 2023
World Duchenne Organization and Duchenne Data Foundation are thrilled to announce that applications for the highly anticipated Duchenne Patient Academy…
Why Vaccinations are Crucial for People with Duchenne and Becker Muscular Dystrophy
Why vaccinations are crucial for people with Duchenne and Becker Muscular Dystrophy: A reminder during World Immunization Week.
PPMD’s 2023 Annual Conference registration is now open
PPMD USA is excited to announce that registration for their 2023 Annual Conference is now open. June 29 to July 1, 2023, in Dallas, Texas.
Register for Duchenne Care Conference 2023
Duchenne Care Conference 2023 focuses on the progress we have made after the 2018 Care Considerations were published in the Lancet.
Register for the FAIR training March 2023
Register for the FAIR training for March 2023: Understanding the value and future impact of the FAIR Guiding Principles.
MENA Organization for Rare Diseases Annual Meeting
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
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!
