Statement I 27 Feb 2023 I Updated 03 March 2023

For the past two decades, the European cancer patient community has worked hard to become competent, reliable, and trusted partners of researchers and policy makers. Through open collaboration, systematic capacity building, and active contributions to key European initiatives, pan-European cancer patient organisations have often been pioneers to make sure patients and carers have impact on the design and implementation of patient-relevant cancer research and policy.

Pan-European and international cancer patient organisations, connected through the Workgroup of European Cancer Patient Advocacy Networks (WECAN), as well as many of their member organisations, are deeply concerned about the alleged irregularities in the European Cancer Patient Coalition (ECPC) as reported in the media and as also previously experienced by patient organisations. Over the past two years, most pan-European patient organisations have been withdrawing their membership and distancing themselves from ECPC.

Malpractice by one organisation can impact the credibility of the whole patient community and its long-standing commitment to trusted and reliable partnerships.

The undersigned patient organisations would like to highlight the fact that what is happening in ECPC is not representative of the European patient community as a whole.

WECAN’s members feel it is our community’s responsibility to live up to the promise of being a reliable partner of research and policy makers. To mitigate negative impact on patient involvement in current EU projects and initiatives that may arise from ECPC’s crisis, and consequently, unintended impact on cancer patients, WECAN and its pan-European member organisations are available to discuss professional and action-oriented solutions to ensure continuity and meaningful patient involvement.

Please feel free to contact the WECAN Secretariat at [email protected] to discuss this.

Signatories of this statement:

Update 03 March 2023: CLL Advocates Network and World Bladder Cancer Patient Coalition were added to the signatories of this statement.