World Duchenne Organization
Budget
€100 — €0
EP Access
1
accredited persons
Staff
2
0.5 FTE
EU Grants
€142,890
Mission & Goals
The World Duchenne Organization is a global umbrella organization of national patient organizations. We are dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents and people living with the condition around the globe. ‘There is a compelling need to ensure that wherever they are in the world, everyone diagnosed with Duchenne (and Becker) Muscular Dystrophy can benefit from a standard of care that is informed by the best practice of the best clinicians from all over the world.’ It is equally important that the information available to parents is contemporary, truthful and is based upon the latest research. In essence, only people with disabilities and diseases know what it means to have this condition. It means they will bring in a different perspective to caregivers, researchers or policymakers. Their questions and needs are based on their own experiences, interests and vision. This is the starting point of t (...)
EU Legislative Interests
Regulation (EU) 2021/695 of the European Parliament and of the Council of 28 April 2021 establishing Horizon Europe – the Framework Programme for Research and Innovation, laying down its rules for participation and dissemination, and repealing Regulations (EU) No 1290/2013 and (EU) No 1291/2013 (Text with EEA relevance) PE/12/2021/INIT ELI: http://data.europa.eu/eli/reg/2021/695/oj Pharmaceutical strategy European Health Data Space (EDHS) Other health and rare disease related proposals or policies
Communication Activities
The World Duchenne Organization is part of the following organizations and institutions: European Patients’ Forum: Full Member EURORDIS: Full Member Eligible member of the European Medicines Agency (EMA) Rare Diseases International: Full Member European Neuromuscular Centre (ENMC): Associated Partner Participation in various EU projects, such as: BEAMER (BEhavioral and Adherence Model for improving quality, health outcomes and cost-Effectiveness of healthcaRe) BIND (Brain Involvement iN Dystrophinopathies) Euro-NMD Registry Hub (build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones) Trials@Home (Remote decentralised clinical trials) Campaigns: World Duchenne Awareness Day (awareness raising campaign) Duchenne Care Conference (educating the clinical community) Duchenne Patient Academy (educating patient representatives) Participation in #Resolution4Rare, the UN General Assembly Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
European Patients’ Forum: Full Member https://www.worldduchenne.org/wp-content/uploads/epf-membership_world-duchenne-organization.pdf EURORDIS: Full Member https://www.eurordis.org/ Eligible member of the European Medicines Agency (EMA) https://www.ema.europa.eu/en Rare Diseases International: Full Member https://www.rarediseasesinternational.org/
Organisation Members
https://www.worldduchenne.org/wdo-members/
Commissioner Meetings
No recorded meetings with EU commissioners.