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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Family: the heart of care - WDAD2025 Documentary
“Family: the heart of care” The documentary of World Duchenne Organization launched on World Duchenne Awareness Day Duchenne muscular dystrophy…
European Parliament patronage for WDAD
World Duchenne Awareness Day has received the patronage of the European Parliament, a recognition of great significance that highlights the…
Trailer of the WDAD2025 Documentary – Family, the Heart of Care
“Family means everyone helps each other, everyone is there for each other, even in hard times.” Family means so much.…
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…
Fundraising initiative dedicated to the Global Duchenne Community
Nithin lives in the UK. He recently completed a charity fundraiser event towards World Duchenne Organization, to a sum of…
The World Duchenne Awareness Day 2025 theme is “Family: the heart of care”.
With this year’s theme, World Duchenne Awareness Day (WDAD) highlights the role of family members for people living…
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…
Registration is now open for the Duchenne Care Conference 2025
The World Duchenne Organization is thrilled to announce that registrations are now open for the Duchenne Care Conference 2025. The…
World Duchenne Organization welcomes Habib Dystrophy Hope Foundation as Aspiring Member
We are excited to announce that Habib Dystrophy Hope Foundation has joined the World Duchenne Organization as our newest Aspiring…
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…
Care Guidelines for Becker muscular dystrophy now available
On September 14, the Becker Care Guidelines for the Clinical Management of Becker Muscular Dystrophy (BMD) were officially presented at…
Road to independence: Documentary about young people with NMD
The documentary 'Road to Independence' portrays the lives of six young people living with neuromuscular diseases. Enrico is preparing to…
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…
Monthly #apaperaday wrap-up: September 2024
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of September 2024.
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…
Today is World Duchenne Awareness Day 2024
At World Duchenne Awareness Day 2024, Raise your voice for Duchenne! Use your voice to raise awareness for people with dystrophinopathies.
A message from Pope Francis for World Duchenne Awareness Day
This year, the Pope is once again giving his blessing for World Duchenne Awareness Day. Read his blessings here.
Trailer for WDAD 2024 documentary out now
The trailer for the World Duchenne Awareness Day 2024 documentary is now live. Stay tuned for the official launch on September 7!
Monthly #apaperaday wrap-up: August 2024
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of August 2024.
A message from Elizabeth Vroom: Raise your voice for Duchenne
Elizabeth is calling on all to join World Duchenne Awareness Day and raise your voice for Duchenne muscular dystrophy.
Monthly #apaperaday wrap-up: July 2024
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of July 2024.
Givinostat – How does it work and what do we know so far for Duchenne?
By Prof Annemieke Aartsma-Rus. This version was generated on July 8, 2024. Givinostat has been approved for the treatment of…
Monthly #apaperaday wrap-up: June 2024
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of June 2024.
The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry Accredited by ADC Program
The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry is the first UK center to receive the accreditation for pediatric and adult care.
Welcome aboard, DGM Germany
DGM Germany joins the World Duchenne Organization as member. We wish a warm welcome to the Deutsche Gesellschaft für Muskelkranke e.V.
World Duchenne Awareness Day 2024 granted patronage by European Parliament
The European Parliament has officially granted its patronage to World Duchenne Awareness Day 2024, which will take place on 7 September 2024.
Monthly #apaperaday wrap-up: May 2024
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of May 2024.
