Lung Cancer Europe

EU Legislative Interests

We work with our partners and members in Europe to support people at risk of lung cancer, people with the disease, survivors and those in a caregiving capacity. We work to raise awareness regarding the lack of funding and resources devoted to lung cancer, which impacts early detection through to treatment and supportive care. A key focus of LuCE is to advocate for equal access to lung cancer diagnostics, treatment and care across all EU countries, so that people can have the best possible outcomes and quality of life. Over the past number of years, LuCE has produced 10 reports on priority lung cancer community topics and presented these at events hosted by MEPs (either in person at the European Parliament in Brussels or virtually). Key points of the LuCE reports are to highlight the level of inequity and experiences affecting Europeans impacted by lung cancer either as an individual living with the disease and their families, people in a caregiving capacity and our lung cancer community as a whole. We believe the findings from these reports are crucial to support and drive the lung cancer policy agenda by increasing advocacy capabilities, elevating the patient voice, and hosting multi-stakeholder events.

Communication Activities

Building awareness of lung cancer and the lung cancer journey is essential to improve outcomes for those in our community. Since 2020, LuCE has had 5 iterations of the Get Checked campaign, focusing on symptoms/risk factors, the diagnostic pathway, biomarker testing and in 2024 our public campaign tackled the stigma associated with the disease by showing the 'many faces of lung cancer'. Materials are translated into multiple European languages and the aim of these campaigns are to reduce the disproportionate mortality associated with the disease in comparison to other cancers (www.getchecked.eu). In 2025, we also launched our 10th report 'Lung Cancer and Mental Health' at a European Oncology Congress; we hosted a number of education events such as webinars on evidence based advocacy and lung cancer research (translated into a minimum of 5 languages thereafter); we delivered two in depth education masterclasses on leadership and artificial intelligence, as well as a number of educational lectures on topics such as orphan drug designation. These events help to build capacity and upskill our membership base, as well as provide advocacy tools to ensure a strong and sustainable lung cancer patient voice. Our key calls to action in 2025 centred on: (1) Raise awareness of lung cancer and early detection, and support risk reduction efforts. We urge public authorities and institutions to commit to educating the public and healthcare professionals about lung cancer risk factors and symptoms, ensuring that everyone understands that anyone with lungs can get lung cancer. (2) Enable shared decision-making to help improve quality of life. Clinicians should develop and put in place a communication strategy to encourage and support discussions with people impacted by lung cancer to help explore their wishes and expectations concerning treatment and care decisions. For effective involvement, healthcare teams should offer complete, clear and comprehensive information about the disease and the treatments and supportive services available based on individual´s preferences and needs. (3) Increase access and reduce inequities in diagnostics, treatment and care.

Interests Represented

Promotes their own interests or the collective interests of their members

Member Of

ECO EMA EPF IASLC ECL EPHA ELF/ERS WECAN ALL Can LCAM Coalition Cancer Patients Europe European Alliance for Personalised Medicine ESR UICC LCPN ELHG

Organisation Members

Österreichische Lungenunion Prolong Moje Plice ALK+ Belgium Association of the patients with respiratory failure and lung transplantation Bulgaria Jedra Croatia Patientforeningen Lungekræft Suomen Syöpäpotilaat Suomen Keuhkosyöpäpotilaat (The Finnish Lung Cancer Patients) ALK FRANCE CANCER POUMON Patients en Reseau/Mon Reseau Cancer du Poumon ALK Positive Europe ALK Positive Deutschland Bundesverband Selbsthilfe Lungenkrebs e.V. Landesverband Baden-Württemberg für Lungenkrebskranke und deren Angehörige e.V Zielgenau Germany Fairlife Lung Cancer Care K.E.F.I. of Athens – Association of Cancer Patients of Athens Lélek-zet Egyesület Israeli Lung Cancer Foundation Associazione Insieme per i pazienti di Oncologia Polmonare IPOP ONLUS European School of Oncology Women Against Lung Cancer in Europe Dzivibas Koks Longkanker Nederland Lungekreftforeningen Pulmonale Federatia Asociatiilor Bolnavilor de Cancer din Romania Društvo onkoloških bolnikov Slovenije Association Punim plućima Asociación Española de Afectados por Cáncer de Pulmón Fundación Más Que Ideas European Thoracic Oncology Platform Lleben mit Lungenkrebs (Living with lung cancer) Switzerland National Lung Cancer Forum for Nurses UK Alk Positive UK Oncogene Cancer Research Athena. Women Against Cancer Ukraine Irish Lung Cancer Community Additional individual members - https://www.lungcancereurope.eu/

Additional Information

(1) Fiduria provide external finance support and process all income and expenditure (2) KPMG perform annual independent audit of finance closing statements (3) Maxima web manage some of the website hosting, development and updates, as well as IT support (4) 7 external contractors (4.5FTE) (5) Multiple contractors to support project development, conduct patient related surveys, printing, graphic design, meeting moderation and facilitation, strategic advisors, communications support (6) 2 x in person member meetings (AGM/GA and Members meeting) including Travel and hospitality for up to 40 - 50 members, plus 5 board, external contractors and speakers for educational masterclasses and lectures (7) Capacity building educational events, speakers and expert trainers (8) Project costs (i.e., LuCE report, Access to Treatment Atlas)