Live/ COVID-19: Coronavirus and Duchenne & Becker muscular dystrophy
A regularly updated news feed on the COVID-19 outbreak with relevant information for Duchenne and Becker muscular dystrophy. 2021 March…
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The position of neuromuscular patients in Shared-Decision-Making
In 2018, the European Neuromuscular Centre (ENMC) held a special meeting dedicated to the position of neuromuscular patients in Shared-Decisino-making…
La Force DMD joins the World Duchenne Organization
Since the official start of the World Duchenne Organization in 2007 (then named United Parent Projects Muscular Dystrophy), the number…
NDA accepted for filing by the FDA for antisense oligonucleotide Viltolarsen
NS Pharma announced the FDA has filed a New Drug Application (NDA) for their antisense oligonucleotide drug NS-065/NCNP-01 (viltolarsen). Viltolarsen is…
PTC Therapeutics publicises real-world data Translarna (ataluren)
PTC Therapeutics Announces First Publication of Real-World Data Showing TranslarnaTM (ataluren) Significantly Preserves Ability to Walk for Longer in Children…
Large international project to study dystrophin in the brain in Duchenne and Becker muscular dystrophy launched
The BIND project is the first project of this scale to improve characterisation of brain involvement in Duchenne and Becker Muscular Dystrophy (DMD…
Holiday wishes from WDO
2019 was a year where things have been given and taken from us. With this community letter, we hope to…
Roche provided rights to Sarepta’s investigational gene therapy for Duchenne.
Roche and Sarepta Therapeutics signed a licensing agreement providing Roche commercial rights to SRP-9001, Sarepta’s investigational gene therapy for Duchenne. …
FDA authorizes first test to aid in newborn screening for Duchenne Muscular Dystrophy
December 12, the U.S. Food and Drug Administration authorized marketing of the first test to aid in newborn screening for…
FDA approves VYONDYS 53TM (golodirsen) in the US
Sarepta Therapeutics Announces FDA Approval of VYONDYS 53TM (golodirsen) Injection for the Treatment of Duchenne Muscular Dystrophy (DMD) in Patients…
Duchenne Patient Academy trains 80 patient advocates from 37 countries
Three years ago, the first Duchenne Patient Academy (DPA) was launched in Athens, Greece. This global patient advocacy initiative was…
VISION-DMD Working Group Meeting
Athens, 6 and 8 December 2019 – The Vision-DMD Working Group Meeting organized by the World Duchenne Organization, preceded the…
Prof. Annemieke Aartsma-Rus to receive EURORDIS Black Pearl Award 2020
11 December 2019, Paris – the World Duchenne Organization congratulates the recipients of the EURORDIS Black Pearl Awards 2020, announced today. Under…
WDO & PPMD certify the Czech Republic’s Motol Children’s Hospital
In late 2017, PPMD announced the formation of a Global Certified Duchenne Care Center (CDCC) Program, offering a path forward for…
Solid Biosciences IGNITE DMD placed on clinical hold
Official press release CAMBRIDGE, Mass., Nov. 12, 2019 (GLOBE NEWSWIRE) -- Solid Biosciences Inc. (Nasdaq: SLDB) today provided a clinical…
Roche terminates SPITFIRE trial
Unfortunately we have a very sad piece of news today: after an interim analysis of the SPITFIRE trial with Roche’s…
Open call for Duchenne Advocates
Context Over the past years, the Duchenne world has been changing due to a fast evolving research and regulatory landscape.…
WDAD receives a message from Pope Francis
Once again, on the occasion of the World Duchenne Awareness Day, Pope Francis, through the president of the organisation Adm…
2019: Nutrition in DMD
NUTRITION IN DMD On World Duchenne Awareness Day, we not only want to raise awareness among the general public about…
WDAD receives high patronage of the European Parliament
World Duchenne Awareness Day 2019 will be celebrated under the High Patronage of the European Parliament It is estimated that…
Symposium On Muscle-Bone Interaction In DMD
21st June 2019 St Virgil Conference Centre, Salzburg, Austria On the 21st of June 2019 a symposium on muscle-bone interaction in…
How you can bring your light to Duchenne families
With World Duchenne Awareness Day approaching, there are so many ways you can get involved in raising awareness on this…
7 tips for effective event communication
"If a tree falls in a forest and no one is around to hear it, does it make a sound?".…
5 steps you can take to raise awareness
share the video + press release Share the BRING YOUR LIGHT FOR WORLD DUCHENNE AWARENESS DAY video on social media,…
Duchenne Family Guide
Thanks to the collaboration of four not-for-profit organizations – the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, Treat-NMD and the World Duchenne Organization – a thoroughly…
2015: Duchenne Stories
A designer, a photographer, a writer and many more ideas came to the mind of the Duchenne boys when, during…
2016: Early Diagnosis
The third edition of the World Duchenne Awareness day was focused on early diagnosis: identifying and communicating early signs of…
2017: Duchenne Dreams
A designer, a photographer, a writer and many more ideas came to the mind of the Duchenne boys when, during…
2018: Standards of Care
In 2018, the WDAD theme was Standards of Care. There is a compelling need to ensure that wherever they are in…
WDO elected as European Patients' Forum member
The European Patients' Forum (EPF) is an umbrella organisation that works with patient groups in public health and health advocacy…
