News Archive • World Duchenne

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World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

March 24, 2023

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

March 24, 2023

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

March 17, 2023

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

March 17, 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

March 4, 2023

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

February 28, 2023

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

February 27, 2023

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

February 21, 2023

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

February 16, 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

February 14, 2023

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?

February 8, 2023

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

February 6, 2023

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 for March 2023

Register for the FAIR training March 2023

February 6, 2023

Monthly #apaperaday wrap-up: December 2022

January 27, 2023

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.

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World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

Family, Friends and Duchenne joins World Duchenne Organization

Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or Patients

Monthly #apaperaday wrap-up: February 2023

World Duchenne Organization honored for outstanding achievement in rare diseases

Help has no borders - The DMD Emergency Program Documentary

WDO Member Meeting 2023: A Recap of the Day

ADC open to accept applications for Duchenne Centers Accreditation

Monthly #apaperaday wrap-up: January 2023

DMD Emergency Program activated for Turkey/Syria earthquake

Clinical trials in DMD: Ten years on, what have we learned?

The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

Register for the FAIR training March 2023

Monthly #apaperaday wrap-up: December 2022

Duchenne and the Brain

ADC open to accept applications for Duchenne Centers Accreditation

Monthly #apaperaday wrap-up: February 2023