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
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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 wholeMain 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
FundraisingAddress
Head Office
c/o European Association of UrologyRue de l'Industrie 24
Brussels 1000
BELGIUMEU Office
c/o European Association of UrologyRue de l'Industrie 24
Brussels 1000
BELGIUMWebsite
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People
Total lobbyists declared
3
Employment time Lobbyists 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
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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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
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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
Type Name Amount 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.
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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.
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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
- Meetings