Cancer Patients Europe

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2023
2024
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Registration as it was on 24 May 2024
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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)

1.5 Fte (3)

Lobbyists with EP accreditation

5

High-level Commission meetings

1

Lobbying Costs over the years

  • Info

    Cancer Patients Europe   (CPE)

    EU Transparency Register

    476628448625-07 First registered on 13 Jan 2023

    Goals / Remit

    Represent and empower the voices of cancer patients and cancer survivors towards policymakers and other stakeholders, with the ultimate objective of co-creating policies that drive prevention, high-quality cancer care, treatment and survivorship in Europe.
    Reduce the burden of cancer on patients and survivors, their carers, the health care systems and the society as a whole

    Main EU files targeted

    European policies and legislations
    Europe’s Beating Cancer Plan
    Patients’ empowerment
    Organisational collaboration between the European and national levels
    Members’ capacity-building
    Fundraising

    Address

    Head Office
    c/o European Association of UrologyRue de l'Industrie 24
    Brussels 1000
    BELGIUM
    EU Office
    c/o European Association of UrologyRue de l'Industrie 24
    Brussels 1000
    BELGIUM

    Website

  • People

    Total lobbyists declared

    3

    Employment timeLobbyists
    50%3

    Lobbyists (Full time equivalent)

    1.5

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    5 accreditations were / are live (in bold) for the selected state of 23 Nov 2024

    Name Start date End Date
    Antonella CARDONE 18 Nov 2024 17 Nov 2025
    Joana KOKALARI 01 Sep 2024 30 Aug 2025
    Tristan Julien Hanssen 01 Oct 2024 30 Sep 2025
    Kaustubh Kiran Dhurandhar 12 Aug 2024 11 Aug 2025
    Joséphine Mosset 01 Aug 2024 31 Jul 2025
    Joana KOKALARI 16 Jan 2024 04 Oct 2024
    Tristan HANSSEN 16 Jan 2024 04 Oct 2024
    Antonella CARDONE 16 Jan 2024 04 Oct 2024

    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

    Pancreatic Cancer Europe - PCE www.pancreaticcancereurope.eu
    EAU - European Association of Urologists: we are a member of the Patient Advocacy Group of the European Association of Urology. The EAU represents the leading authority within Europe on urological practice, research, and education.
    https://patients.uroweb.org/patient-advocacy/
    EFPIA - European Federation of Pharmaceutical Industries Association - Patient Think Tank: We are a member of the European Federation of Pharmaceutical Industries and Associations - EFPIA Patient Think Tank that provides a forum for an open exchange of ideas, information, and perspectives between patient organisations and the industry on topical issues impacting on patients.
    https://www.efpia.eu/relationships-code/patient-organisations/efpia-patient-think-tank/
    EFPIA Oncology Platform stakeholder group: We are a member of the European Federation of Pharmaceutical Industries and Associations – EFPIA Oncology Platform stakeholder group
    https://www.efpia.eu/about-medicines/use-of-medicines/disease-specific-groups/fighting-cancer/
    All.Can is an international multi-stakeholder not-for-profit organisation working to improve the efficiency of cancer care by focusing on what matters to patients.
    https://www.all-can.org/

    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

    40,000€

    Major funding types in closed year

    Other

    Funding types "other" information

    Pharma company sponsorship

    Major contributions in closed year

    TypeNameAmount
    Contribution Exact Sciences International GmbH 40,000€

    Other financial info

    The balance sheet 2022 approved by CPE General Assembly on 22 May 2023, covers the period from March to December 2022, less then 12 months.

  • EU Structures

    Groups (European Commission)

    None declared

    Groups (European Parliament)

    N/A

    Communication activities

    On the 17th of November 2022, CPE launched the results of the first European-wide patient survey in genomic testing in breast cancer.

    4 out of 5 breast cancer patients eligible for genomic testing are not told it is available to them.

    The survey was completed by a total of 1,383 respondents from five countries (France, Germany, Italy, Spain, UK) over a six-week period in September/October 2022. Eighty-three percent (83%) of respondents had breast cancer; 50% of whom were eligible for genomic testing. The results revealed an overwhelming lack of awareness and need for medical professionals to communicate about genomic testing in breast cancer:

    Sixty-three percent (63%) of respondents stated that they have not heard about genomic testing in cancer.
    Fifty-five percent (55%) of respondents stated they do not know the difference between genetic and genomic testing.
    Seventy-eight percent (78%) of respondents who were eligible for genomic testing were not told they were eligible.
    Eighty-four percent (84%) of eligible patients stated they did not have enough information to make a decision on whether to take a genomic test.
    Half of respondents (49%) either do not or only sometimes find the information that they need in a way that they can understand.
    Only a quarter (25%) of eligible patients have taken a genomic test.
    The survey is a part of a wider initiative, My Cancer my Concern (myC), launched by CPE to raise awareness of the benefits and value of genomic testing in cancer, which allows eligible patients with early-stage breast cancer the opportunity to benefit from personalised or precision medicine. Genomic testing can also help in some treatment decisions, including whether patients are likely to benefit from adjuvant chemotherapy. The project encompasses CPE’s broader goal of improving the management of cancer for patients across Europe.

    Other activities

    None declared

  • Meetings

    Meetings

    1 meetings found. Download meetings

    The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.

    1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.

    • Date 09 Apr 2024 Location Videoconference
      Subject Europe’s Beating Cancer Plan; quality of life
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Attending
      • Stella Kyriakides (Commissioner)
      • Tove Ernst (Cabinet member)
      Other Lobbyists
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