2016: Early Diagnosis
The third edition of the World Duchenne Awareness day was focused on early diagnosis: identifying and communicating early signs of…
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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…
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…
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…
WDO Member Meeting 2019
The first WDO Member Meeting of 2019 was a great success. Over 50 participants from 24 countries gathered on February…
From Laboratory to Patient: an EMA Authorised Medicine Journey
The European Medicines Agency (EMA) is a neutral medicine regulator and can therefore not sponsor medicine, or fund research studies…
WDO Member Meeting 2019
During the annual Duchenne Conference organized by Parent Project Onlus that takes place in Rome on Feb 15-17, the World Duchenne Organization hosts a meeting…
Update on Duchenne UK’s survey and workshop to discuss the use of re-purposed or off label medicines
Last month, Duchenne UK hosted a workshop to discuss the use of re-purposed or off label medicines. We conducted a survey…
Translating DMD-Care Videos
Previous World Duchenne Awareness Day, we published a series of educational videos to make Duchenne Care information accessible for as…
PPMD Publishes 10 Year Registry Report
PPMD is excited to announce the release of the Ten Year Registry Report. This report is the culmination of data…
PPMD Duchenne Compass Meeting report
The Duchenne Patient-Focused Compass Meeting was held as part of FDA’s Patient-Focused Drug Development (PFDD) initiative. As an externally led…
PPMD Meeting Update: Inflammation in Duchenne
Last month, PPMD convened a day and half meeting – Inflammation in Duchenne: Current and New Treatment Strategies – to…
Project Hercules will receive Eurordis Company Award for Patient Engagement
In November 2017 Duchenne UK launched Project HERCULES to support access to new treatments for Duchenne Muscular Dystrophy (DMD). Today,…
Webinar on PolarisDMD: Phase 3 Clinical Trial of Edasalonexent
CAMBRIDGE, Mass., November 2, 2018 - Catabasis Pharmaceuticals, Inc (NASDAQ:CATB), a clinical-stage biopharmaceutical company, and Parent Project Muscular Dystrophy (PPMD) will host a webinar:…
Duchenne Data Foundation presents: Duchenne Academy
Join patient groups, experts and companies from different countries of the world over 4 days at the Duchenne Academy Friday…
Ingrid Verhaart receives Elsevier WMS Membership Award
This weekend, the World Muscle Society Congress 2018 was held in Argentina. The WMS is an annual congress on neuromuscular…
AAV Microdystrophin gene therapy for DMD
With the courtesy of European Neuromuscular Centre (ENMC), please find here the lay reports of the ENMC workshops related to…
Sarepta announces clinical hold lifted for its Duchenne Muscular Dystrophy micro-dystrophin gene therapy program
Sarepta Therapeutics, Inc., announced that the Food and Drug Administration (FDA) has lifted the clinical hold for the Company’s Duchenne…
Catabasis announces initiation of Phase 3 PolarisDMD trial for edasalonexent
Catabasis Pharmaceuticals, Inc., a clinical-stage biopharmaceutical company, today announced the initiation of PolarisDMD, the Company’s Phase 3 trial for edasalonexent…
Sarepta receives negative CHMP re-examination opinion for eteplirsen
This morning, Sarepta announced that following its request for re-examination, the Committee for Human Medicinal Products (CHMP) in Europe issued…
Pfizer terminates clinical studies of Domagrozumab
Pfizer Inc. announced on August 30, 2018 that it is terminating two ongoing clinical studies evaluating domagrozumab (PF-06252616) for the treatment of…
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…
Duchenne Care Conference 2018
At Duchenne Care Conference 2018, global stakeholders are joining the discussion around the implementation of the latest Standards of Care.
Share4Rare Patient-Powered Co-Design Workshop
Brussels, Belgium. This Monday, another successful Share4Rare workshop was held in Brussels, organized by The Synergist. With participants from over 6…
Bone Protective Therapy in Duchenne MD
With the courtesy of European Neuromuscular Centre (ENMC), please find here the lay reports of the ENMC workshops related to…
Duchenne Parent Project congress “Duchenne and the brain”
The annual congress of the Duchenne Parent Project, the Netherlands, was this year held in Heeze, the Netherlands and focused…
