News Archive • World Duchenne

Showing 30 results of 294

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.

World Duchenne Awareness Day 2024 granted patronage by European Parliament

June 18, 2024

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

June 11, 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.

Duchenne Care Conference 2024 successfully concluded, recordings available

June 7, 2024

The recordings of Duchenne Care Conference 2024 are now available. It provides a platform for sharing the latest updates on Duchenne MD care.

World Duchenne Awareness Day 2024 Theme Announced

June 3, 2024

The World Duchenne Awareness Day 2024 theme is ‘Raise your voice for Duchenne’. World Duchenne Awareness Day (WDAD) is an…

White Paper Released: Newborn Screening for Duchenne Muscular Dystrophy – The Time is Now

May 31, 2024

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

May 17, 2024

From the start of May, Brazil is experiencing an environmental and humanitarian tragedy due to the floods. Nearly 1.5 million…

Patient's Sudden Death in Pfizer Gene Therapy Study

May 7, 2024

It is with great sadness we share the information we just received. A patient participating in Pfizer’s Phase 2 DAYLIGHT…

Monthly #apaperaday wrap-up: April 2024

May 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 April 2024.

Duchenne Care Conference 2024: Registrations are open

April 26, 2024

Registrations for the Duchenne Care Conference 2024 are now open. Healthcare professionals and patient organization representatives are invited to join this online educational event.

Givinostat for Becker muscular dystrophy- A randomized, placebo-controlled, double-blind study

Monthly #apaperaday wrap-up: March 2024

April 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 March 2024.

World Duchenne Organization Welcomes Graciela Méndez as New Board Member

April 5, 2024

World Duchenne Organization is glad to announce Graciela Méndez (Mexico) as its newest board member. She will succeed Santiago Ordoñez.

Duchenne Care Conference 2024: Save the Date

March 11, 2024

After our successful Duchenne Care Conference 2023, when hundreds of healthcare professionals from more than 60 countries around the globe…

Monthly #apaperaday wrap-up: February 2024

March 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 February 2024.

New Accredited Duchenne Center: Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra, Mexico

February 29, 2024

We are thrilled to announce that the Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra, in Mexico City, Mexico becomes the first hospital…

Translarna (Ataluren): Disappointing news for the Duchenne community

January 26, 2024

Amsterdam, January 26, 2024- The Duchenne community, represented by the World Duchenne Organization, was deeply disappointed to be informed about…

How the VISION of DMD patients helped the development of a new steroid

December 22, 2023

Approval of AGAMREE® The approval of AGAMREE®, (formerly known as vamorolone) on Monday 18 December by the European Medicines Agency for the treatment…

University Clinical Center in Gdansk, Poland Achieves Accredited Duchenne Center Status

December 15, 2023

We are thrilled to announce that the University Clinical Center (UCC) in Gdansk, Poland, becomes the first hospital to be…

Successful Conclusion of Duchenne Patient Academy 2023

December 7, 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

December 1, 2023

We are thrilled to announce the winner of the 'Dr. Imelda de Groot Award' for 2023. This annual accolade, initiated…

United Nations Officially Designates September 7 as World Duchenne Awareness Day

November 29, 2023

The United Nations has marked a momentous milestone for the global rare disease community by officially designating September 7th as…

WDO Webinar: Gene Therapy in Duchenne Muscular Dystrophy

November 8, 2023

This November 7, the World Duchenne Organization (WDO) convened a webinar for its members to explore the evolving landscape of…

FDA Approves Vamorolone as a Treatment for Duchenne Muscular Dystrophy

October 26, 2023

Today, the U.S. Food and Drug Administration (FDA) has granted its approval for Vamorolone, a new treatment for Duchenne Muscular…

ALDIM Joining World Duchenne Organization

October 20, 2023

We are happy to announce that the Leonesa Association for Muscular Dystrophy (ALDIM) is joining World Duchenne Organization (WDO). By…

Applications Now Open for Duchenne Patient Academy 2023

October 18, 2023

World Duchenne Organization and Duchenne Data Foundation are thrilled to announce that applications for the highly anticipated Duchenne Patient Academy…

Europe's CHMP Issues Positive Opinion For Santhera’s AGAMREE® (vamorolone) To Treat Duchenne Muscular Dystrophy

October 13, 2023

The Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion in favor of the approval of…

Translarna (ataluren): Devastating news for the Duchenne community

September 15, 2023

The Duchenne community, represented by the World Duchenne Organization, is deeply disappointed to be informed about the recommendation of EMA’s…

World Duchenne Awareness Day 2023: Breaking Barriers Globally

September 11, 2023

World Duchenne Awareness Day 2023 marked a great success in our mission to advocate for people living with Duchenne and…

七色堇 (Seven Petal Pansy): China Joins World Duchenne Organization

August 3, 2023

We are excited to announce that Seven Petal Pansy (China) has become a full member of the World Duchenne Organization.

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

Welcome aboard, DGM Germany

World Duchenne Awareness Day 2024 granted patronage by European Parliament

Monthly #apaperaday wrap-up: May 2024

Duchenne Care Conference 2024 successfully concluded, recordings available

World Duchenne Awareness Day 2024 Theme Announced

White Paper Released: Newborn Screening for Duchenne Muscular Dystrophy – The Time is Now

Tragic Flooding in Brazil: DMD Emergency Program activated

Patient's Sudden Death in Pfizer Gene Therapy Study

Monthly #apaperaday wrap-up: April 2024

Duchenne Care Conference 2024: Registrations are open

Monthly #apaperaday wrap-up: March 2024

World Duchenne Organization Welcomes Graciela Méndez as New Board Member

Duchenne Care Conference 2024: Save the Date

Monthly #apaperaday wrap-up: February 2024

New Accredited Duchenne Center: Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra, Mexico

Translarna (Ataluren): Disappointing news for the Duchenne community

How the VISION of DMD patients helped the development of a new steroid

University Clinical Center in Gdansk, Poland Achieves Accredited Duchenne Center Status

Successful Conclusion of Duchenne Patient Academy 2023

Announcing the Winner of the Dr. Imelda de Groot Award 2023

United Nations Officially Designates September 7 as World Duchenne Awareness Day

WDO Webinar: Gene Therapy in Duchenne Muscular Dystrophy

FDA Approves Vamorolone as a Treatment for Duchenne Muscular Dystrophy

ALDIM Joining World Duchenne Organization

Applications Now Open for Duchenne Patient Academy 2023

Europe's CHMP Issues Positive Opinion For Santhera’s AGAMREE® (vamorolone) To Treat Duchenne Muscular Dystrophy

Translarna (ataluren): Devastating news for the Duchenne community

World Duchenne Awareness Day 2023: Breaking Barriers Globally

七色堇 (Seven Petal Pansy): China Joins World Duchenne Organization

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