News

This year, the 6th edition of Duchenne Patient Academy will take place. The Academy provides online  training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. This year’s theme is ‘Changing Perspectives’ and it will take place on December 1 – 3 2022. Over the course of 3 days, DMD and BMD patient advocates will […]

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2. Women in Duchenne
15 July 2022, 3:43 pm

Why for World Duchenne Awareness Day 2022, women are in the spotlight. In Duchenne and Becker Muscular Dystrophy the spotlight is –almost always– on boys and the men living with the rare muscle-wasting disease. No wonder, as it is an X-linked disease. This means that the genetic mutation is located on the X-chromosome of which […]

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Duchenne Vietnam successfully applied for the WDO Aspiring Membership, joining the World Duchenne Organization.

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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 June 2022.

The post Monthly #apaperaday wrap-up: June 2022 appeared first on World Duchenne.

How will FAIR optimize the use of patient data? The 3rd International FAIR data 'visiting' for Duchenne & Other Rare Diseases is November 22.

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Professor Aartsma-Rus shares her highlights of the PPMD Conference 2022 that was taking place June 23-26 in Phoenix Arizona.

The post Prof Aartsma-Rus’ Clinical Trial Highlights of PPMD Conference 2022 appeared first on World Duchenne.

This year, the 6th edition of Duchenne Patient Academy will take place. The Academy provides online  training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. This year’s theme is ‘Changing Perspectives’ and it will take place on December 1 – 3 2022. Over the course of 3 days, Duchenne Patient Academy 2022 attendees will … Continue reading Duchenne Patient Academy 2022

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Bringing Data to life In Duchenne Data Foundation (DDF), we strive to bring data to life to improve research and care for dystrophinopathies. Through the Duchenne Data Repository, we aim to connect, collect, and make accessible all different types of dystrophinopathy data from various sources at a global level. The current research landscape in the … Continue reading Duchenne Data Repository, connecting and collecting dystrophinopathy data

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A diagnosis of Duchenne impacts the full family. Dr. Moriconi, psychologist in Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, shares her insights on the challenges that siblings face. The bond between siblings is important in the life of an individual: it runs through all the phases of the life cycle and contributes to the construction … Continue reading Challenges of Duchenne Siblings

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4. Duchenne Siblings Webinar
25 May 2022, 7:52 am

The Duchenne Data Foundation is organizing a webinar on Duchenne Siblings. This webinar is part of the Duchenne and Becker Digital Program, created to discuss in depth subjects that were raised from the community during the Duchenne Patient Academy. In this webinar, we will discuss the insights, challenges and feedback received from the community in … Continue reading Duchenne Siblings Webinar

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While assuring medical assistance for people living with Duchenne Muscular Dystrophy (DMD) is extremely important, all aspects of everyday life of those living with the condition and their families are heavily impacted. Access to a full life, education, psychological support, work and activities is an important issue that people living with DMD and their families … Continue reading The daily life of people living with Duchenne Muscular Dystrophy and their families

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The Duchenne Data Foundation and the World Duchenne Organization are staying close to the families affected by Duchenne and Becker MD in Ukraine due to the conflict. We urge Ukrainian families to contact us and send any information, updates and requests to [email protected] Follow the page below to stay informed on the actions taken to support … Continue reading Duchenne Emergency Program activated for Ukrainian Duchenne and Becker MD families

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Duchenne Map is an online platform built to centralize important information and connect the different stakeholders of the DMD/BMD community. It was created to connect people living with Duchenne or Becker Muscular Dystrophy with their local patient organizations, healthcare providers, care centers, researchers, research institutions and companies. Clinical Trials Last year, the clinical trials finder filter function … Continue reading Duchenne Map presents personalized clinical trial finder

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8. New Board of Directors member
18 January 2022, 1:22 pm

The Duchenne Data Foundation welcomes Arjen Bergsma as Board Member Arjen Bergsma is currently working as programme officer of medical technology at the Dutch Research Council. He is specialized in Applied and Engineering Sciences (NWO-TTW). Arjen reiceved his MSc degree in Biomedical Engineering at the University of Twente in 2009. In 2016, he obtained a … Continue reading New Board of Directors member

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Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully deployed an innovative and sustainable FAIR solution, achieving a FAIR status. Findability – machines can find DDP Accessibility – machines can read that access is open for metadata  Interoperability – a FAIR transformation solution has been implemented … Continue reading Duchenne Data Platform, the first patient-led registry to achieve a FAIR status

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Last week, the 5th edition of Duchenne Patient Academy has taken place virtually. More than 75 Duchenne and Becker MD patient advocates from over 40 countries actively participated in the 5-day training. The goal of this Academy is to educate and strengthen the global Duchenne and Becker Muscular Dystrophy community. Duchenne Patient Academy is a … Continue reading DMD community celebrates successful Duchenne Patient Academy 2021

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