Stichting Duchenne Data Foundation

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2022
2023
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Registration as it was on 15 Sep 2023
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Overview

Lobbying Costs

400,000€ - 499,999€

Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

3.1 Fte (6)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    Stichting Duchenne Data Foundation   (DDF)

    EU Transparency Register

    872373245398-90 First registered on 07 Feb 2022

    Goals / Remit

    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.

    Main EU files targeted

    - 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)

    Address

    Head Office
    Warmoesdreef 10
    Bergen op Zoom 4514 HC
    NETHERLANDS
    EU Office
    Warmoesdreef 10
    Bergen op Zoom 4514 HC
    NETHERLANDS

    Website

  • People

    Total lobbyists declared

    6

    Employment timeLobbyists
    100%2
    50%1
    25%2
    10%1

    Lobbyists (Full time equivalent)

    3.1

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    None declared

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    None declared

    Member organisations

    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

  • Financial Data

    Interests represented

    Promotes their own interests or the collective interests of their members

    Closed financial year

    Jan 2022 - Dec 2022

    Lobbying costs for closed financial year

    400,000€ - 499,999€

    Major contributions in closed year

    TypeNameAmount
    Grant EU BIND PROJECT 34,300€

    Intermediaries for closed year

    None declared

    Intermediaries for current year

    None declared

    Closed year Costs

    400,000€ - 499,999€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    Disability#Artificial intelligence and digital#Children's rights#Rare diseases, paediatric rare diseases, FAIR data networks and initiatives, EU databases - registries, Open Science

    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

    Other activities

    None declared

  • Meetings

    Meetings

    None declared

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