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World Duchenne Organization

Acronym: WDO

General Information

Identification Code: 051535245114-08
Website: [object Object]
Entity Form: Non-profit organisation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 1/10/2022
Last Update: 12/7/2023
EP Accredited Number: 0

Mission & Interests

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 (...)
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Digital economy and society
  • Justice and fundamental rights
  • Public health
  • Research and innovation
Levels of Interest:
  • global

Activities

Main EU Legislative Proposals: 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
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
Inter-institutional or Unofficial Groupings: Disability,Unofficial groupings

Head Office

Address: Landjuweel 34
Post Code: 3905 PG
City: Veenendaal
Country: NETHERLANDS
Phone: [object Object]

EU Office

Address: Landjuweel 34
Post Code: 3905 PG
City: Veenendaal
Country: NETHERLANDS
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 0
Members25 Percent: 2
Members50 Percent: 0
Members75 Percent: 0
Members: 2
Members F T E: 0.5

Structure

Structure Type: Structure
Is Member Of: https://www.worldduchenne.org/wdo-members/
Organisation Members: 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/