News

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.

The post Monthly #apaperaday wrap-up: May 2024 appeared first on World Duchenne.

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

The post Duchenne Care Conference 2024 successfully concluded appeared first on World Duchenne.

The World Duchenne Awareness Day 2024 theme is ‘Raise your voice for Duchenne’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this year’s theme, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 11th edition.   Raise your voice for Duchenne This […]

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In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled:  Development and Pilot Validation of the DuMAND Checklist to Screen for Duchenne Muscular Dystrophy-Associated Neurobehavioral Difficulties (DuMAND) Today’s pick is from @journal_nd by Geuens et al on the Duchenne muscular dystrophy associated neurobehavioral difficulties (DuMAND) checklist. Disclosure: I was the associate editor handling […]

The post #apaperaday: Development and Pilot Validation of the DuMAND Checklist to Screen for Duchenne Muscular Dystrophy-Associated Neurobehavioral Difficulties (DuMAND) appeared first on World Duchenne.

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.

The post White Paper Released: Newborn Screening for Duchenne Muscular Dystrophy – The Time is Now appeared first on World Duchenne.

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: A rare complex structural variant of novel intragenic inversion combined with reciprocal translocation t(X;1)(p21.2;p13.3) in Duchenne muscular dystrophy It is complex DMD variant day, with a paper from Wang et al (different from the Wang et al monozygotic triplet paper earlier this week) […]

The post #apaperaday: A rare complex structural variant of novel intragenic inversion combined with reciprocal translocation t(X;1)(p21.2;p13.3) in Duchenne muscular dystrophy appeared first on World Duchenne.

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Respiratory comorbidities and treatments in Duchenne muscular dystrophy: impact on life expectancy and causes of death Today’s pick is a confetti favorite for Yuzu, from Journal of Neurology by Wahlgren et al on respiratory comorbidities in Duchenne patients and their impact on life […]

The post #apaperaday: Respiratory comorbidities and treatments in Duchenne muscular dystrophy: impact on life expectancy and causes of death appeared first on World Duchenne.

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Discordant Monozygotic Triplets with Duchenne Muscular Dystrophy The pick today is from annals neurology by Wang et al on monozygotic triplets with Duchenne DOI: 10.1002/ana.26966 Authors report 3 Duchenne patients, who are monozygotic triplets (tripletness genetically confirmed) with a deletion of exon 49-52. […]

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In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled:  Predictors of Loss of Ambulation in Duchenne Muscular Dystrophy: A Systematic Review and Meta-Analysis Today’s final Duchenne genetics TREAT-NMD Duchenne masterclass themed pick is from @journal_nd by Landfeldt et al on predictors of loss of ambulation in Duchenne. I’m back home meanwhile but […]

The post #apaperaday: Predictors of Loss of Ambulation in Duchenne Muscular Dystrophy: A Systematic Review and Meta-Analysis appeared first on World Duchenne.

From the start of May, Brazil is experiencing an environmental and humanitarian tragedy due to the floods. Nearly 1.5 million people are affected and many are Duchenne families who lost their home, some are isolated. The World Duchenne Organization has activated the DMD Emergency Program for the floods in Brazil. Karina Zuge, Chair of the […]

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Lisbon, Portugal – The MAGIC Consortium is proud to announce the participation of Instituto de Medicina Molecular João Lobo Antunes (iMM) in the MAGIC Project. This expansion is supported through the HORIZON-WIDERA-2023-ACCESS call that aims to widen participation and strengthen the European Research Area.  The mission of iMM is to foster basic, clinical, and translational … Continue reading iMM Joins the MAGIC Consortium to Advance Research on Muscular Dystrophies

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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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