Cancer Patients Europe
Acronym: CPE
General Information
Identification Code: 476628448625-07
Website: [object Object]
Entity Form: ASBL
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 1/13/2023
Last Update: 5/24/2024
EP Accredited Number: 3
Mission & Interests
Goals: 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
Interests Represented: Does not represent commercial interests
Interests:
- Public health
- Research and innovation
Levels of Interest:
- european
Activities
Main EU Legislative Proposals: European policies and legislations
Europe’s Beating Cancer Plan
Patients’ empowerment
Organisational collaboration between the European and national levels
Members’ capacity-building
Fundraising
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.
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: c/o European Association of UrologyRue de l'Industrie 24
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
EU Office
Address: c/o European Association of UrologyRue de l'Industrie 24
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: 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.
Membership Information
Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 3
Members75 Percent: 0
Members: 3
Members F T E: 1.5
Structure
Structure Type: Structure
Is Member Of: https://cancerpatientseurope.org/members/
Organisation Members: 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/