Seven Seas: Duchenne Japan now WDO Aspiring Member
Seven Seas, the Duchenne patient advocacy group from Japan has joined the World Duchenne Organization (WDO) as Aspiring Member.
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FDA Approves ELEVIDYS (delandistrogene moxeparvovec-rokl) Gene Therapy for Duchenne Muscular Dystrophy
The FDA granted accelerated approval to ELEVIDYS (delandistrogene moxeparvovec-rokl). This is what you need to know.
World Duchenne Organization Concludes Successful Duchenne Care Conference 2023
The Duchenne Care Conference 2023 is a platform to learn, share and connect to improve the lives of people living with dystrophinopathies.
Monthly #apaperaday wrap-up: May 2023
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of May 2023.
Agenda & Speakers for Duchenne Care Conference 2023
The agenda and speakers for Duchenne Care Conference 2023 features an array of expert speakers in Duchenne and Becker research and care.
Monthly #apaperaday wrap-up: April 2023
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of April 2023.
World Duchenne Awareness Day 2023 Theme – Duchenne: Breaking Barriers
The World Duchenne Awareness Day 2023 theme is 'Duchenne: Breaking Barriers' promoting social inclusion for people with dystrophinopathies.
DMD Emergency Program Provides Aid to Duchenne Families in Ukraine
The DMD Emergency Program announces the successful delivery of humanitarian aid to people living with Duchenne and Becker in Ukraine.
Why Vaccinations are Crucial for People with Duchenne and Becker Muscular Dystrophy
Why vaccinations are crucial for people with Duchenne and Becker Muscular Dystrophy: A reminder during World Immunization Week.
BharathMD Foundation (India) joins World Duchenne Organization
BharathMD Foundation, a newly founded parent advocacy organization in India, has recently become a member of the World Duchenne Organization.
PPMD’s 2023 Annual Conference registration is now open
PPMD USA is excited to announce that registration for their 2023 Annual Conference is now open. June 29 to July 1, 2023, in Dallas, Texas.
Monthly #apaperaday wrap-up: March 2023
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of March 2023.
Register for Duchenne Care Conference 2023
Duchenne Care Conference 2023 focuses on the progress we have made after the 2018 Care Considerations were published in the Lancet.
World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts
The recent 3-day online FAIR Training course will be embedded in the FAIR training portfolio Health-RI is currently developing.
Family, Friends and Duchenne joins World Duchenne Organization
Family, Friends and Duchenne joins World Duchenne Organization. The group aims to address common themes that people with Duchenne face.
Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or Patients
We successfully showed how five rare disease registries for neuromuscular disorders can now be jointly queried because they are interoperable
Monthly #apaperaday wrap-up: February 2023
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of February 2023.
World Duchenne Organization honored for outstanding achievement in rare diseases
World Duchenne Organization is honored for outstanding achievement in rare diseases at the MENA Organization for Rare Diseases Conference
Help has no borders - The DMD Emergency Program Documentary
World Duchenne Organization launches the documentary Help Has No Borders as part of the DMD Emergency program.
WDO Member Meeting 2023: A Recap of the Day
The WDO Member Meeting 2023 focused on emergencies in Duchenne and was a platform for sharing experiences, learning, and inspiring others.
ADC open to accept applications for Duchenne Centers Accreditation
The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy.
Monthly #apaperaday wrap-up: January 2023
Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of January 2023.
DMD Emergency Program activated for Turkey/Syria earthquake
The DMD Emergency Program has been activated for Turkey and Syria, providing resources and support to the families after the earthquake.
Clinical trials in DMD: Ten years on, what have we learned?
Clinical trials in DMD: Ten years on, what have we learned? A lay report of the ENMC Workshop discussion of participants’ experiences.
The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases
The recording and slides of the 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases are now available.
Register for the FAIR training March 2023
Register for the FAIR training for March 2023: Understanding the value and future impact of the FAIR Guiding Principles.
Monthly #apaperaday wrap-up: December 2022
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.
Duchenne Hungary joins World Duchenne Organization
Duchenne Hungary is supporting children and families with Duchenne and Becker MD. Now, they are Member of the World Duchenne Organization.
EMA Recommendations: Facilitating Decentralized Clinical Trials in the EU
The European Medicines Agency (EMA) published recommendations that aim to facilitate the conduct of decentralized clinical trials (DCTs).
2022 Wrap-up: Activities of World Duchenne Organization
Elizabeth Vroom looks back on 2022, listing all activities of the World Duchenne Organization, and carefully draws a rough outline for 2023.
