Call of interest: Global DMD Adult Group
The Global DMD Adult Group, initiated by adults with Duchenne Muscular Dystrophy (DMD), aims to connect and empower people living…
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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…
Applications now open for Duchenne Patient Academy 2024
World Duchenne Organization (WDO) and Duchenne Data Foundation (DDF) are thrilled to announce that applications for the Duchenne Patient Academy…
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.…
European Partnership Opens a New Era in Rare Disease Research
The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget of 380 million euros and…
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.
Tragic Flooding in Brazil: DMD Emergency Program activated
From the start of May, Brazil is experiencing an environmental and humanitarian tragedy due to the floods. Nearly 1.5 million…
World Duchenne Awareness Day 2023 Theme – Duchenne: Breaking Barriers
The World Duchenne Awareness Day 2023 theme is 'Duchenne: Breaking Barriers' promoting social inclusion for people with dystrophinopathies.
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.
Help has no borders - The DMD Emergency Program Documentary
World Duchenne Organization launches the documentary Help Has No Borders as part of the DMD Emergency program.
ADC open to accept applications for Duchenne Centers Accreditation
The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy.
Dr Imelda de Groot award for improving care in Duchenne
The ‘Dr Imelda de Groot’ is an annual award and meant to stimulate persons to improve care for persons with Duchenne muscular dystrophy (DMD).
World Duchenne Organization announces Accredited Duchenne Centers Program
World Duchenne Organization announces the launch of the Accredited Duchenne Centers Program, a worldwide accreditation for Duchenne Centers.
Webinar: Información del Estudio BIND para Familias en España
Un seminario web para familias en España para el estudio BIND sobre desafíos de aprendizaje y comportamiento en Duchenne y Becker MD
World Duchenne Organization Leadership Award for Professor Muntoni
WDO Leadership Award, the highest recognition for individual achievement, is awarded to Professor Francesco Muntoni.
FAIR Data Sharing Without Oversharing
Duchenne Parent Project NL and EURO-NMD can now begin leveraging their FAIR data to benefit People Living With Rare Diseases.
Webinar: BIND Studie informatie voor families in Nederland
Een webinar voor gezinnen in Nederland die mee willen doen aan het BIND-onderzoek naar leer- en gedragsuitdagingen in Duchenne en Becker.
Webinar: BIND Study information for UK Families
BIND researchers from the London site share the study information to interested UK Duchenne and Becker Muscular Dystrophy (DMD/BMD) families.
Dr Imelda de Groot Award 2022 applications now open
The Dr Imelda de Groot Award stimulates researchers and clinicians to develop activities in the Duchenne and Becker muscular dystrophy.
Relief Ukraine: Tool to trace Ukrainian patients’ needs of medicines
Relief Ukraine connects patients with chronic diseases with the organizations responsible for distributing aid and support.
WDO Aspiring Membership
The WDO Aspiring Membership is created for patient groups that are interested, but not eligible to become a full member.
ACT EU: Better clinical trials in the EU that address patients’ needs
ACT EU: initiative to transform how clinical trials are initiated, designed and run, referred to as Accelerating Clinical Trials in the EU.
UN General Assembly Adopts first Resolution on people living with rare diseases
The UN General Assembly Adopts first Resolution on people living with rare diseases and their families.
New EU project BEAMER seeks to improve patient adherence to prescribed treatments
An international consortium will investigate factors affecting patient treatment adherence and develop a model to assess and understand patient needs,…
Return of clinical trial data survey
Invitation to participate in a short survey gathering opinions on returning clinical trial data to patients.
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.
Share4Rare: Setting the path for next generation data sharing in rare diseases
Share4Rare shares the findings and outputs of their project, setting the base for the next generation of data sharing in rare diseases.
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.
España es la primera en abrir un estudio para investigar la DMD / DMB y la salud mental
España es la primera en reclutar niños y adultos #Duchenne y #Becker para el proyecto BIND dirigido a investigar el impacto de DMD/DMB en la conducta y función cognitiva.
Returning Individual Clinical Trial Data Back To Participants
VISION-DMD today released a white paper on returning meaningful individual clinical trial results. The focus of the white paper ‘Returning…
