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…
Showing 30 results of 363
Patient's Sudden Death in Pfizer Gene Therapy Study
It is with great sadness we share the information we just received. A patient participating in Pfizer’s Phase 2 DAYLIGHT…
United Nations Officially Designates September 7 as World Duchenne Awareness Day
The United Nations has marked a momentous milestone for the global rare disease community by officially designating September 7th as…
Monthly #apaperaday wrap-up: April 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 now open
We are excited to announce the upcoming Duchenne Care Conference 2024. This online conference is taking place on May 27…
Duchenne Care Conference 2024: Registrations are open
Registrations for the Duchenne Care Conference 2024 are now open. Healthcare professionals and patient organization representatives are invited to join this online educational event.
Monthly #apaperaday wrap-up: March 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
World Duchenne Organization is glad to announce Graciela Méndez (Mexico) as its newest board member. She will succeed Santiago Ordoñez.
New Accredited Duchenne Center: Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra in Mexico
We are thrilled to announce that the Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra, in Mexico City, Mexico becomes the first hospital…
Duchenne Care Conference 2024: Save the Date
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
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
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
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
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
We are thrilled to announce that the University Clinical Center (UCC) in Gdansk, Poland, becomes the first hospital to be…
University Clinical Center in Gdansk Poland Achieves Accredited Duchenne Center Status
We are thrilled to announce that the University Clinical Center (UCC) in Gdansk, Poland, becomes the first hospital to be recognized as…
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…
United Nations Officially Designates September 7 as World Duchenne Awareness Day
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
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
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
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
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
The Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion in favor of the approval of…
Breaking Barriers: The story of Lizanne Schreur
Lizanne Schreur (23) is a woman living with Duchenne muscular dystrophy (DMD), a condition that predominantly affects males. In this…
Translarna (ataluren): Devastating news for the Duchenne community
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
World Duchenne Awareness Day 2023 marked a great success in our mission to advocate for people living with Duchenne and…
WDAD Documentary: Breaking Barriers
The official documentary for World Duchenne Awareness Day 2023 is now live! The WDAD Documentary: Breaking Barriers is directed by…
七色堇 (Seven Petal Pansy): China Joins World Duchenne Organization
We are excited to announce that Seven Petal Pansy (China) has become a full member of the World Duchenne Organization.
Organize an Event or Conference
World Duchenne Awareness Day, observed on September 7, presents a great opportunity for patient advocacy groups and patient organizations to…
