Cancer Patients Europe

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/

None declared

Does not represent commercial interests

Jan 2022 - Dec 2022

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.

40,000€

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.

None declared

N/A

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.

None declared

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.

• 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	RPP Group EUROPA DONNA-The European Breast Cancer Coalition European Cancer Organisation European Society for Medical Oncology (ESMO) Association of European Cancer Leagues