Democratizing access to information and care for Duchenne MD
WDO receives a grant to empower patients and parents in developing countries affected by Duchenne Muscular Dystrophy
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Duchenne Emergency and Capacity Building Program
Duchenne Data Foundation and the World Duchenne Organization start the Duchenne Emergency and Capacity Building Program Amsterdam, 15 February –…
Exploring preclinical and clinical studies that might not have met expectation
The World Duchenne Organization is happy to hear that Duchenne Parent Project NL and Parent Project MD are supporting the…
EJP RD – Networking Support Scheme (NSS) Call
The goal of the Networking Support Scheme (NSS) in the European Joint Programme for Rare Diseases (EJP RD) is to…
Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
EURO-NMD, the European Reference Network for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more…
IRDiRC publishes Orphan Drug Development Guidebook
Over the past 2-3 years, IRDiRC has been working with their Therapies Scientific Committee, on a project called Orphan Drug Development…
How to optimise your social media channels to receive donations
Over the last few weeks we have seen many events like conferences and fundraising activities are being postponed or even…
Raising awareness on psychosocial issues in DMD/BMD
Today, Duchenne Data Foundation launched a new website called Social Duchenne. This project aims to highlight psychosocial issues in people…
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…
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…
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…
Highlights on Data sharing for Duchenne meeting
21-22 March 2019, Level Eleven – Amsterdam, the Netherlands Data is one of the few technologies that becomes of greater…
Share4Rare launches community platform
Share4Rare is born, an innovative platform to connect patients, caregivers and researchers of rare diseases around the globe. This multi-stakeholder project…
Duchenne Community Advisory Board (CAB)
Just over one year ago, Duchenne Data Foundation initiated the Duchenne Community Advisory Board (CAB) as part of the EuroCAB…
Translating DMD-Care Videos
Previous World Duchenne Awareness Day, we published a series of educational videos to make Duchenne Care information accessible for as…
Updated Family Guide for DMD
Duchenne Muscular Dystrophy (Duchenne) is a rare genetic (inherited) disease defined by muscle weakness that gets progressively worse over time…
Duchenne Care Videos
There is a compelling need to ensure that wherever they are in the world, individuals affected by Duchenne Muscular Dystrophy…
