Cancer Patients Europe

EU Legislative Interests

EU Health Technology Assessment (HTA) Regulation Member of the EU HTA Stakeholder Network Working Group on identification of patients and clinicians. Identification and support of patients for Joint Clinical Assessments (JCA) and Joint Scientific Consultations (JSC). Joint Call to Action on EU HTA implementation for ATMPs, which contributed to a milder European Commission position on ATMPs. Partner in the HTAi PCIG project to develop a patient PICO survey and promote inclusion of plain-language summary information in EU HTA outputs. European Health Data Space (EHDS) Advocacy for a patient-centred EHDS ensuring secure, transparent and fair use of health data for cancer patients. Contribution to EU-level debates and consultations on governance, secondary use of health data and patient involvement. Reform of EU Pharmaceutical Legislation / EU Pharmaceutical Strategy White Paper on embedding treatment optimisation and pragmatic clinical trials in EU cancer research policy, launched at the European Parliament. Position paper calling for a broad, patient-centric and flexible definition of Unmet Medical Needs to safeguard innovation and equity of access. Access to prescription medicines online Participation in the On Home Alliance, calling for the removal of barriers to safe online access to prescription medicines and home delivery across Member States. European Semester and cancer inequalities European Semester Manifesto proposing a pilot to include cancer and inequalities indicators and a European “dashboard” in the Semester process. Organisation of a launch event at the European Parliament, a workshop at the European Health Forum Gastein, and a second EP event to build support. Ongoing work to define cancer-related indicators and bilateral outreach to EU and national stakeholders. AMR and cancer / Critical Medicines Act / EU Biotech Act Development of a White Paper on antimicrobial resistance (AMR) in oncology to inform EU discussions on the Critical Medicines Act, EU Biotech Act and wider medicines/health security policies. Contributions to EU and EMA consultations on critical medicines and shortages affecting cancer patients. EU cross-border clinical trials Advocacy for a European framework that improves equitable access to cross-border clinical trials for cancer patients, including removal of administrative and practical barriers. Flagship joint Calls to Action Call to Action on the Right to Be Forgotten in Ireland to support national implementation of fair financial and insurance practices for cancer survivors. Joint Call to Action on the implementation of the EU HTA Regulation and JCA for ATMPs to ensure meaningful and structured patient involvement.

Communication Activities

1. Treatment Optimisation in EU Cancer Research: Cancer Patients Europe, together with EORTC, launched the White Paper “Embedding Treatment Optimisation and Pragmatic Clinical Trials in EU Cancer Research Policy” at the European Parliament. Discussions focused on dosage, sequencing, duration, and quality of life, stressing how Pragmatic Clinical Trials can generate evidence that matters to patients. The initiative calls for meaningful patient involvement, stronger public investment, and a more sustainable, patient-centred cancer research model across Europe. 2. Genomics and Cancer: ESR1 and Liquid Biopsy CPE is actively involved in raising awareness of ESR1 mutations and liquid biopsy testing in metastatic breast cancer. We conducted a comprehensive survey of patients and healthcare professionals, the findings of which are being developed into a white paper outlining the current understanding of ESR1 mutations, and liquid biopsy with recommendations for improving patient care and outcomes. 3. Rare Cancers – BPDCN: To increase understanding of blastic plasmacytoid dendritic cell neoplasm (BPDCN), CPE has conducted a communication campaign including social media dissemination an educational webinar, and developed a comprehensive fact sheet. These resources provide valuable information about BPDCN for patients and healthcare providers, with the goal of promoting early diagnosis and access to effective treatments to improve outcomes for those affected by this rare disease. 4. HTA Cancer Patient Awareness: Co-organised by Cancer Patients Europe, AECC, and Fundació HiTT, this initiative strengthens cancer patients’ understanding and involvement in the new EU HTA Regulation. During the event at the Congreso de los Diputados in Madrid, stakeholders discussed Spain’s implementation of the regulation, with a focus on precision oncology and ESR1. The discussion highlighted the need to remove knowledge barriers, provide patient training, and ensure inclusive engagement. The initiative ultimately aims to promote equity, earlier access to innovation, and meaningful patient participation in HTA processes. 5. European Semester Manifesto: To promote the inclusion of health in the European Semester process, with cancer as a pilot, CPE has jointly drafted an EU Semester Manifesto and is actively conducting a communication campaign around this initiative. This includes organising events at the EU Parliament to raise awareness and advocate for the inclusion of cancer-specific indicators in the European Semester process.

Interests Represented

Does not represent commercial interests

Member Of

CPE Alliances: EMIH –European Microbiome Innovation for Health OnHOME Alliance Cancer Prevention Europe Coalition Against Nitrities EEA - European Access Academy BBMRI-ERIC - Biobanking and Biomolecular Resources Research Infrastructure – European Research Infrastructure Consortium EU-X-CT Initiative World Ovarian Cancer Coalition CPE Collaborations ESMO EHA – European Hematology Association MedTech Europe EONS – European Oncology Nursing Society European Medicines Agency EAU - European Association of Urologists EFPIA - European Federation of Pharmaceutical Industries Association Medicines for Europe Patient Think Tank ESNO - European Specialist Nurses Association Alliance for Regenerative Medicines EUCOPE - European Confederation of Pharmaceutical Entrepreneurs AISBL FEAM – Federation of European Academies of Medicine MNI – Medical Nutrition International Industry All.Can ESTRO EORTC Ending Discrimination Against Cancer Survivors PCE - Pancreatic Cancer Europe

Organisation Members

https://cancerpatientseurope.org/members/

Additional Information

The 2024 Balance Sheet was approved by the CPE General Assembly on June 27th 2025, and is available on the CPE website: https://cancerpatientseurope.org/wp-content/uploads/2025/08/CPE-2024-accounts-summary_signed.pdf