News

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

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After our successful Duchenne Care Conference 2023, when hundreds of healthcare professionals from more than 60 countries around the globe attended, we invite you to save the date for the 2024 edition of the Duchenne Care Conference.   Sign up for Duchenne Care Conference 2024   Duchenne Care Conference 2024 Online educational event for healthcare […]

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We are thrilled to announce that the Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra, in Mexico City, Mexico becomes the first hospital to be recognized as an Accredited Duchenne Center for pediatric and adult care. We would like to extend our congratulations to the multidisciplinary Duchenne team at Instituto Nacional de Rehabilitacion Luis Guillermo Ibarra. This team is […]

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Amsterdam, January 26, 2024-  The Duchenne community, represented by the World Duchenne Organization, was deeply disappointed to be informed about the recommendation of EMA’s human medicines committee (CHMP) in September 2023 not to renew the Conditional Marketing Authorisation for Translarna (ataluren), a medicine for treating patients with Duchenne muscular dystrophy (DMD) with nonsense mutations, which […]

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Approval of AGAMREE® The approval of AGAMREE®, (formerly known as vamorolone) on Monday 18 December by the European Medicines Agency for the treatment of Duchenne Muscular Dystrophy (DMD) represents a landmark event for the rare disease community. AGAMREE® is a novel designer steroid-like drug. The development has been driven by an academic and patient led venture philanthropy approach unlike the usual pharma development.   Patient funding […]

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We are thrilled to announce that the University Clinical Center (UCC) in Gdansk, Poland, becomes the first hospital to be recognized as an Accredited Duchenne Center for pediatric care. We would like to extend our congratulations to the multidisciplinary Duchenne team at UCC. This team is led by Dr. Karolina Śledzińska and Prof. Jolanta Wierzba, […]

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The World Duchenne Organization and Duchenne Data Foundation are happy to announce the successful conclusion of Duchenne Patient Academy 2023. The training was taking place November 30 to December 2 in the city of Athens, Greece. Twenty highly motivated patient advocates from across the globe joined this interactive training. Duchenne Patient Academy 2023 saw 20 […]

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We are thrilled to announce the winner of the ‘Dr. Imelda de Groot Award’ for 2023. This annual accolade, initiated by the Duchenne Parent Project in the Netherlands, aims to inspire advancements in the care of individuals with Duchenne muscular dystrophy (DMD), with a particular focus on innovative projects. Dr. Imelda de Groot leads the […]

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The United Nations has marked a momentous milestone for the global rare disease community by officially designating September 7th as World Duchenne Awareness Day, set to be observed annually from 2024. The adoption of the resolution “World Duchenne Awareness Day” is the UN’s first formal acknowledgment of a day dedicated to a rare disease. The […]

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This November 7, the World Duchenne Organization (WDO) convened a webinar for its members to explore the evolving landscape of gene therapy for Duchenne Muscular Dystrophy (DMD). The recording is now available. This article provides an overview of the insights shared during this webinar, emphasizing the importance of research and safety aspects in a field […]

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The World Duchenne Organization and Duchenne Data Foundation are happy to announce the successful conclusion of Duchenne Patient Academy 2023. The training was taking place November 30 to December 2 in the city of Athens, Greece. Twenty highly motivated patient advocates from across the globe joined this interactive training. Duchenne Patient Academy 2023 saw 20 … Continue reading Successful Conclusion of Duchenne Patient Academy 2023

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World Duchenne Organization and Duchenne Data Foundation are thrilled to announce that applications for the highly anticipated Duchenne Patient Academy 2023 are now open. This immersive in-person training event for Duchenne and Becker patient advocates is taking place from November 30 to December 2, 2023. After three successful years of virtual Academies, this marks the … Continue reading Applications Now Open for Duchenne Patient Academy 2023

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C-Path’s Duchenne Regulatory Science Consortium and Duchenne Data Foundation Announce Collaboration to Advance Solutions for Duchenne Muscular Dystrophy TUCSON, Ariz. and VEENENDAAL, Netherlands, August 9, 2023 — Critical Path Institute’s (C-Path) Duchenne Regulatory Science Consortium (D-RSC) and the Duchenne Data Foundation (DDF) are excited to announce a joint collaboration aimed at advancing research and improving … Continue reading C-Path’s D-RSC and DDF Announce Collaboration to Advance DMD Solutions

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London, July 11, 2023 – We are thrilled to announce the launch of the groundbreaking project “MAGIC” (Next-generation Models And Genetic therapIes for rare neuromusCular diseases). This ambitious four-year initiative jointly funded (~9.5M EUR) by Horizon Europe and UK Research and Innovation (UKRI) brings together 15 international partners to transform the treatment landscape for muscular … Continue reading MAGIC Project: Accelerating Development of Genetic Therapies for Muscular Dystrophies

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We are thrilled to announce that the Duchenne Map ECRD abstract has been published in the prestigious Orphanet Journal of Rare Diseases. Duchenne Map is a groundbreaking initiative addressing the challenges faced by the dystrophinopathy community. ECRD Abstract The publication of the Duchenne Map abstract in the Orphanet Journal of Rare Diseases after European Conference … Continue reading Publication of Duchenne Map ECRD Abstract in the Orphanet Journal of Rare Diseases

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Veenendaal, May 25 2023 – The Duchenne Data Foundation (DDF) and EBRAINS are delighted to announce their collaboration and coordinated efforts to support data sharing related to Duchenne and Becker Muscular Dystrophy (DMD/BMD). This partnership aims to promote brain-related research and development initiatives in the field of dystrophinopathies. The collaboration between DDF and EBRAINS brings … Continue reading Promote Sharing of DMD Brain Data to Enhance Research: DDF & EBRAINS Collaboration

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The DMD Emergency Program is proud to announce the successful delivery of humanitarian aid to people living with Duchenne Muscular Dystrophy (DMD) in Ukraine. Duchenne Ukraine expressed its gratitude for the financial and material assistance received. It has made a significant impact on the lives of these families. Since the Russia-Ukraine war started, the DMD … Continue reading DMD Emergency Program Provides Aid to Duchenne Families in Ukraine

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Amsterdam February 28, 2023 – We are thrilled to announce the documentary Help Has No Borders as part of the DMD Emergency program. Over the last years, the world has faced dramatic emergencies that have changed the lives of millions of people. This Rare Disease Day, the World Duchenne Organization launches the documentary Help Has … Continue reading Help has no borders – The DMD Emergency Program Documentary

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Amsterdam, 17 February 2023 – We are thrilled to announce that the applications for Duchenne Centers Accreditation are now open. The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy. Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus … Continue reading Applications for Duchenne Centers Accreditation now open

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December 8, 2022 – Duchenne Patient Academy successfully concludes 2022 edition. The World Duchenne Organization and Duchenne Data Foundation organized another highly anticipated training for patient advocates. Duchenne Patient Academy provides training and education opportunities for people involved in patient advocacy for people living with Duchenne and Becker Muscular Dystrophy (DMD and BMD). The 2022 … Continue reading Duchenne Patient Academy 2022 successfully concluded

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