Inspire2Live

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Registration as it was on 28 Aug 2023
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Overview

Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

Lobbying Costs

None declared

Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

0.6 Fte (2)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    Inspire2Live

    EU Transparency Register

    272486517947-03 First registered on 23 Jun 2015

    Goals / Remit

    Getting cancer under control and inspiring people to lead happy and healthy lives in harmony with cancer!

    In our mission, we are the patient’s voice in cancer, because there is too little patient’s perspective present in decisions on cancer research, treatments and regulations. And they need our help now. Everywhere, and not only the ones in the future.

    Inspire2Live is a patient advocacy organization. The purpose of Inspire2Live is get cancer under control. We believe that this is feasible when patients, physicians and scientists work together to share knowledge, data and inspiration together.

    Main EU files targeted

    - Tobacco file
    - Development, patents, market access and reimbursement of new medicines and diagnostics
    - Personalised Medicine
    - HORIZON and IMI project funding
    - broad use of whole genome sequencing in diagnostics

    Address

    Head Office
    Duwboot 20
    Houten 3991 CD
    NETHERLANDS
    EU Office
    Noorderakerweg 271B
    Amsterdam 1069 LT
    NETHERLANDS

    Website

    http://inspire2live.org

  • People

    Total lobbyists declared

    2

    Employment timeLobbyists
    50%1
    10%1

    Lobbyists (Full time equivalent)

    0.6

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    Inspire2Live werkt volledig met onbezoldigde patient advocates. Daar zij slechts hun reis- en verblijfkosten vergoed krijgen bij hun inzet, blijven de jaarlijkse kosten gemoeid met lobby lager dan men qua omvang zou verwachten.

    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

    https://inspire2live.org/about-us/the-patients-voice/partners/

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2022 - Dec 2022

    Lobbying costs for closed financial year

    Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

    Total organisational budget in closed year

    115,340€

    Major funding types in closed year

    Other, Donations

    Major contributions in closed year

    None declared

    Other financial info

    Door de ontvangst van een donatie in 2020 (gerapporteerd in dat jaar, ook verantwoord in het jaarverslag 2020) is er sprake van voldoende liquiditeit om het budget 2022 uit eigen vermogen te financieren.

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    Artificial intelligence and digital#Cancer

    Communication activities

    1. Consultancy European Committee on outlines future HORIZON funding

    Inspire2Live is taking part in consultancy rounds of the European Committee on the future of HORIZON.

    Our view on Horizon and IMI2 partnerships in short:

    Active PA involvement has to be part from any initial proposal onwards for an application to even be considered for funding: if about us, not without us!
    Change it into an Open Source Pharma Fund to finance projects that consist of:
    AI on basis of FAIR ( i.e.in which WGS-data is compared to pharmacogenetics and pharmacogenomics);
    Wetlabs (do the AI-outcomes for best treatment work? Registration real life data);
    Licensing (IP, FAIR access; fair pricing).

    2. Whole Genome Sequencing

    We want the best treatment based on Whole Genome Sequencing to become available for everyone. We support an initiative by several MP's in Dutch Parliament to achieve that goal and want to roll out our initiative European wide.

    3. IVDR implementation

    Other activities

    None declared

  • Meetings

    Meetings

    None declared

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