We are excited to announce that Habib Dystrophy Hope Foundation has joined the World Duchenne Organization as our newest Aspiring Member. Founded in 2020 by Mohammadi Mohiuddin, a devoted mother and advocate from Pakistan, the foundation is named to honor her beloved son, Habib, whose journey and resilience through Duchenne muscular dystrophy (DMD) continues to […]
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The Global DMD Adult Group, initiated by adults with Duchenne Muscular Dystrophy (DMD), aims to connect and empower people living with DMD and BMD. The goal is to become a platform for sharing stories, discussing challenges, while raising global awareness. Currently it is opening a call of interest to join the working group. Last World […]
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On September 14, the Becker Care Guidelines for the Clinical Management of Becker Muscular Dystrophy (BMD) were officially presented at the TREAT-NMD Becker Education and Engagement Day in Milan en Amsterdam in multiple languages. These guidelines are a major milestone. They represent the first clinical management tool specifically designed for patients and families affected by […]
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The documentary ‘Road to Independence’ portrays the lives of six young people living with neuromuscular diseases. Enrico is preparing to face his high school final exams and to say goodbye to the enriching experience of his life. Maddalena has left Sardinia, her homeland, to pursue her studies in Milan, embracing the challenges and opportunities of […]
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The recent BIND Webinar brought together patients, caregivers, and researchers with a shared interest in advancing our understanding of brain comorbidities in Duchenne and Becker muscular dystrophies (DMD/BMD). Hosted by the World Duchenne Organization, this webinar provided key insights into the BIND (Brain Involvement in Dystrophinopathies) Project, an international research initiative dedicated to studying learning […]
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World Duchenne Organization (WDO) and Duchenne Data Foundation (DDF) are thrilled to announce that applications for the Duchenne Patient Academy 2024 are now open for WDO Members. This online training event for Duchenne and Becker (DMD/BMD) patient advocates will take place online on December 6 and 7. This year we are inviting the new generation […]
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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.
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In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: The Adiponectin Receptor Agonist, ALY688: A Promising Therapeutic for Fibrosis in the Dystrophic Muscle Today’s pick is slightly older, from 2023 in @Dra_Cells by Dubuisson et al on testing an adiponectin receptor agonist in the mdx mouse model for Duchenne. Adiponectin is a […]
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In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Relationship between growth and ambulation loss in Duchenne muscular dystrophy boys on steroids Today I’m travelling to @Radboud_Uni to teach and the pick is from European Journal of Neurology by Stimpson et al on the relationship between growth and loss of ambulation in […]
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In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Evaluation of fatigue and fatigability in people with Duchenne muscular dystrophy using a dynamic arm support – a pilot study Today’s pick is again from Porto and the pilot test of fatigue and fatigability in Duchenne patients with and without using a dynamic […]
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World Duchenne Organization (WDO) and Duchenne Data Foundation (DDF) are thrilled to announce that applications for the Duchenne Patient Academy 2024 are now open for WDO Members. This online training event for Duchenne and Becker (DMD/BMD) patient advocates will take place online on December 6 and 7. This year we are inviting the new generation … Continue reading Applications now open for Duchenne Patient Academy 2024
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ERDERA was launched in September 2024 with a remarkable budget of 380 million euros, marking a significant commitment from the European Union, Horizon Europe, and member states. Coordinated by the National Institute of Health and Medical Research (INSERM) in France, this ambitious partnership unites over 170 organizations from the public and private sectors to advance rare disease research and … Continue reading Be Part of a Major Milestone in Rare Disease Research: Join ERDERA’s Launch Event!
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Funding to continue genotype phenotype correlation of the DMD and BMD brain Leiden, September 18, 2024 – The BIND project is thrilled to announce that the Leiden University Medical Center (LUMC), together with the Duchenne Data Foundation (DDF), has secured funding to further continue deep phenotyping of the brain in Duchenne and Becker muscular dystrophy … Continue reading BIND Project secures funding to continue genotype phenotype correlation of DMD/BMD brain
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We are thrilled to announce the launch of the ERDERA partnership, an initiative spearheaded by the European Union under Horizon Europe and led by France’s National Institute of Health and Medical Research (INSERM). This partnership aims to transform the Rare Disease landscape by joining the efforts of more than 170 partners (public and private organizations) from … Continue reading Launch of the ERDERA partnership
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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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