News Archive • World Duchenne

Showing 30 results of 292

FAIR Training Webinar Empowers Global Community to Advance FAIR Data Implementations in Rare Diseases

October 8, 2025

The World Duchenne Organization, in collaboration with ERDERA and its associated partners, successfully hosted the FAIR Training Webinar, bringing together…

From Data Silos to FAIR Solutions: The Duchenne Community Leads the Way

October 6, 2025

World Duchenne Organization Announces New Milestones in Making DMD/BMD Data FAIR Veenendaal, 6th October 2025: The World Duchenne Organization, together…

What to expect at the FAIR Training Webinar 2025

September 17, 2025

What to expect at the FAIR Training Webinar 2025 With the agenda now finalized, the first part of the FAIR…

Family: the heart of care - WDAD2025 Documentary

September 7, 2025

“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

September 5, 2025

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

August 29, 2025

“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

July 21, 2025

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

June 19, 2025

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”.

June 6, 2025

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

June 4, 2025

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

March 28, 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

November 29, 2024

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

November 29, 2024

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

November 29, 2024

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

November 11, 2024

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

November 6, 2024

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

October 30, 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

October 1, 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

September 18, 2024

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

September 16, 2024

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

September 7, 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

September 7, 2024

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

September 1, 2024

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

September 1, 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

August 7, 2024

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

July 31, 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?

July 15, 2024

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

July 5, 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

June 28, 2024

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

June 21, 2024

DGM Germany joins the World Duchenne Organization as member. We wish a warm welcome to the Deutsche Gesellschaft für Muskelkranke e.V.

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FAIR Training Webinar Empowers Global Community to Advance FAIR Data Implementations in Rare Diseases

From Data Silos to FAIR Solutions: The Duchenne Community Leads the Way

What to expect at the FAIR Training Webinar 2025

Family: the heart of care - WDAD2025 Documentary

European Parliament patronage for WDAD

Trailer of the WDAD2025 Documentary – Family, the Heart of Care

FAIR Training Program 2025 - 2027: Registration now open for Part 1

Fundraising initiative dedicated to the Global Duchenne Community

The World Duchenne Awareness Day 2025 theme is “Family: the heart of care”.

Duchenne Care Conference 2025 highlights advances in clinical management of DMD and BMD

Registration is now open for the Duchenne Care Conference 2025

World Duchenne Organization welcomes Habib Dystrophy Hope Foundation as Aspiring Member

Call of interest: Global DMD Adult Group

Care Guidelines for Becker muscular dystrophy now available

Road to independence: Documentary about young people with NMD

Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

Applications now open for Duchenne Patient Academy 2024

Monthly #apaperaday wrap-up: September 2024

BIND Webinar: Understanding the role of dystrophin in the brain

European Partnership Opens a New Era in Rare Disease Research

Today is World Duchenne Awareness Day 2024

A message from Pope Francis for World Duchenne Awareness Day

Trailer for WDAD 2024 documentary out now

Monthly #apaperaday wrap-up: August 2024

A message from Elizabeth Vroom: Raise your voice for Duchenne

Monthly #apaperaday wrap-up: July 2024

Givinostat – How does it work and what do we know so far for Duchenne?

Monthly #apaperaday wrap-up: June 2024

The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry Accredited by ADC Program

Welcome aboard, DGM Germany

Road to independence: Documentary about young people with NMD

Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

Applications now open for Duchenne Patient Academy 2024