News

Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of December 2022.

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

Duchenne Hungary is supporting children and families with Duchenne and Becker MD. Now, they are Member of the World Duchenne Organization.

The post Duchenne Hungary joins World Duchenne Organization appeared first on World Duchenne.

The European Medicines Agency (EMA) published recommendations that aim to facilitate the conduct of decentralized clinical trials (DCTs).

The post EMA Recommendations: Facilitating Decentralized Clinical Trials in the EU appeared first on World Duchenne.

Elizabeth Vroom looks back on 2022, listing all activities of the World Duchenne Organization, and carefully draws a rough outline for 2023.

The post 2022 Wrap-up: Activities of World Duchenne Organization appeared first on World Duchenne.

Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of November 2022.

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

The MENA Organization for Rare Diseases Annual Meeting is held in Dubai from March 3-5, 2023. The region's largest rare diseases event.

The post MENA Organization for Rare Diseases Annual Meeting appeared first on World Duchenne.

January 31, the European Medicines Agency hosts a webinar on patient involvement in the development, regulation and safe use of medicines.

The post Webinar: Patient involvement in the development, regulation and safe use of medicines appeared first on World Duchenne.

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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Do you have an innovative or breakthrough project related to the Duchenne field that you wish to share with the global community? Submit an E-Poster abstract for the 2022 edition of Duchenne Patient Academy. Selected authors will be invited to present their E-Poster during the event taking place on December 1. The poster session will … Continue reading Submit Poster for Duchenne Patient Academy 2022

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Duchenne Data Foundation partners with World Duchenne Organization to enhance patient advocacy and education and help drive the international advocacy agenda for people living with dystrophinopathies. Applications for Duchenne Patient Academy 2022 are now open. Are you a Duchenne and/or Becker MD patient advocate? Do you have a serious interest in the unique challenges of … Continue reading Duchenne Patient Academy 2022 Applications Now Open

The post Duchenne Patient Academy 2022 Applications Now Open appeared first on Duchenne Data Foundation.

Duchenne Parent Project and European Reference Network for Neuromuscular Diseases can now begin leveraging their FAIR data to benefit People Living With Rare Diseases. Veenendaal, September 1st, 2022 | Joint Press Release: The Duchenne Parent Project, ERN EURO-NMD and FAIR Data Systems S.L. are proud to announce that with other collaborators they have made an … Continue reading FAIR Data Sharing Without Oversharing

The post FAIR Data Sharing Without Oversharing appeared first on Duchenne Data Foundation.

5. WORLD DUCHENNE AWARENESS DAY 2022
5 September 2022, 12:30 pm

Official online event 2022 Women & Duchenne Every year, during the World Duchenne Awareness Day, we highlight important topics for the Duchenne community. This year the theme is Women and Duchenne. During the online event, all aspects relevant to Duchenne and the Female world will be analyzed: Carriers: genetic and clinical aspects Care considerations for … Continue reading WORLD DUCHENNE AWARENESS DAY 2022

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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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9. 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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