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Stichting Duchenne Data Foundation

Acronym: DDF

General Information

Identification Code: 872373245398-90
Website: [object Object]
Entity Form: Non-for-profit organization (legal person)
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 2/7/2022
Last Update: 9/15/2023
EP Accredited Number: 0

Mission & Interests

Goals: The Duchenne Data Foundation (DDF) works to achieve the best possible outcomes for the global dystrophinopathy community(people living with Duchenne and Becker Muscular Dystrophy and carriers). DDF brings together all sources of data related to dystrophinopathies, to make an impact for the global community. Our strategic direction is built around four key pillars: RESEARCH & DEVELOPMENT DDF connects data to generate new evidence that informs all areas of research. STANDARDS OF CARE & QUALITY OF LIFE DDF strives for all people living with dystrophinopathies around the world to have access to the latest standards of care and the best quality of life. EDUCATION & TRAINING Our goal is to empower the global dystrophinopathy community voice to ensure research is patient and family centered and led. DATA GOVERNANCE & ACCESS DDF advocates for people living with dystrophinopathies to be in control of their own data.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Budget
  • Communication
  • Digital economy and society
  • Education and training
  • International co-operation and development
  • Public health
  • Regional policy
  • Research and innovation
  • Trans-European Networks
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 - EU AI strategy key provisions (https://digital-strategy.ec.europa.eu/en/library/coordinated-plan-artificial-intelligence-2021-review) and AI/ML EU Regulations ( COM/2021/206 final, COM(2021) 202 final) - Data Governance Act (COM/2020/767 final)
Communication Activities: - European projects BIND project (improve characterisation of Brain Involvement in Dystrophinopathies): www.bindproject.eu Euro-NMD Registry Hub (build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones): www.registry.ern-euro-nmd.eu - Duchenne Data Foundation projects: Duchenne Patient Academy (education of Duchenne Muscular Dystophy patient advocates): www.duchennepatientacademy.org Duchenne Map (online platform centralising important information, acting as a hub to connect all those associated with DMD): www.duchennemap.org Social Duchenne (an international project highlighting psychosocial issues in Duchenne and Becker muscular dystrophy): www.duchennedatafoundation.org/project/social-duchenne
Inter-institutional or Unofficial Groupings: Artificial intelligence and digital,Children's rights,Disability,Unofficial groupings

Head Office

Address: Warmoesdreef 10
Post Code: 4514 HC
City: Bergen op Zoom
Country: NETHERLANDS
Phone: [object Object]

EU Office

Address: Warmoesdreef 10
Post Code: 4514 HC
City: Bergen op Zoom
Country: NETHERLANDS
Phone: [object Object]

Financial Data

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

Membership Information

Members10 Percent: 1
Members25 Percent: 2
Members50 Percent: 1
Members75 Percent: 0
Members: 6
Members F T E: 3.0999999046325684

Structure

Structure Type: Structure
Is Member Of: Close collaboration with World Duchenne Organization (https://www.worldduchenne.org/). DDF works in close collaboration with WDO to achieve the best possible outcomes for the global dystrophinopathy community. Collaboration with GO-FAIR (https://www.go-fair.org/) for the FAIR treatment of Duchenne/Becker Muscular Dystrophy Data