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Lung Cancer Europe

Acronym: LuCE

General Information

Identification Code: 112188222754-11
Website: [object Object]
Entity Form: Association according to the provision of Articles 60 et seq. of the Swiss Civil Code
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 7/21/2016
Last Update: 3/13/2024
EP Accredited Number: 0

Mission & Interests

Goals: LuCE is committed at increasing the survival rates and the improvement of health related quality of life of lung cancer patients in Europe. Our 4 Key Goals: Increase awareness of lung cancer To ensure equitable access to the best possible treatment Reduce lung cancer mortality by driving earlier detection and biomarker testing Equality of holistic care for lung cancer throughout Europe
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Public health
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: We work with our partner groups in Europe to support patients, survivors and caregivers, to raise awareness of the lack of funding and resources devoted for lung cancer. A key focus of LuCE is to advocate for equal access to Lung Cancer diagnostics and treatments across all EU countries. Over the past 8 years, LuCE has produced 8 reports and presented these at an organised event in the European Parliament hosted by MEP's. Key points of the report are to highlight the level of inequity affecting Europeans impacted by lung cancer either an individual living with diagnosis, their caregiver or family and lung cancer communities. We consider the findings from these reports crucial, to support and drive the lung cancer agenda by increasing advocacy capabilities, elevating the patient voice, and hosting multi-stakeholder roundtables including European health interest groups.
Communication Activities: Since 2020 LuCE has run a focused Lung Cancer Public Awareness Campaign named "Get Checked". Each year the campaign has a focused message from risk factors, symptoms, testing for the disease etc with a call action to Get Checked. Building lung cancer awareness is essential in order to reduce the disproportionate mortality associated with the disease in comparison to other cancers. The campaign is translated in 18 European languages www.getchecked.eu. In 2023 we built awareness with a call to action "Get Checked" to "Get diagnosed" educating the diagnostic pathway following symptom presentation, seeking a medical assessment, secure an early and accurate diagnosis to testing with a focus on the importance of biomarker testing. November 2023 - Lung Cancer Europe 8th report on lung cancer "Financial impact of lung cancer: A European perspective" published and presented in the European parliament hosted by Mr. István Ujhelyi, Member of the European Parliament and co-chair of the MEP Lung Health Group 2023 - Hosted a series of educational programmes to support and develop advocacy within the lung cancer community. These are translated in a minimum of 5 European languages and on demand thereafter. Introduced a masterclass attended by LuCE members on application, focusing an in-depth understanding and necessary skill to be an effective leader. CALLS TO ACTION Screen for financial toxicity and provide programmes to assist with costs, if financial vulnerability is detected. Healthcare teams should encourage discussions with people impacted by lung cancer to help explore their financial needs. Those affected should be directed to resources and information which can help to reduce expenses associated with treatment and care and to mitigate increased costs because of the disease situation. Increase income replacement programme coverage for people unable to work because of lung cancer or caregiving. Reduction of income due to changes in employment is one of the biggest repercussions of a lung cancer diagnosis. Employed individuals are more likely to experience a drop in income due to the disease. Appropriate compensation benefits should be funded through social welfare systems by governments and provided for those unable to work because of lung cancer. Other key Call to Action Points: Ensure access that necessary supports that impact lung cancer care and treatment i.e. Psychological Advocate for new guidelines on Lung cancer screening programs - Putting guidelines in place that will allow countries to set-up quality assured early detection programmes for lung cancer, as has already in place i.e. breast, cervical and colorectal cancers as a means to reduce lung cancer mortality. Early diagnosis - Promote screening and diagnosis guidelines for lung cancer with evidence-based recommendations. Raise awareness and education on the symptoms of lung cancer among the general public and knowledge among general practitioners. Access to molecular testing and innovative treatments . Ensure the access to molecular testing and novel therapies for patients. · Collect and publish information about testing and treatment access across Europe. · Stimulate the development and accreditation of lung cancer specialized centers in Europe · Create a single European System dedicated to the evaluation the benefits of new drugs. Research and development of new medicines . Ensure funds continue to be available for research and innovation in the field of lung cancer. · Reduce inequalities in access to clinical trials across Europe, and facilitate the movement of European citizens to participate in clinical trials. · Strengthen patient involvement in the R&D, providing training and education about this process.
Inter-institutional or Unofficial Groupings: Cancer

Head Office

Address: LuCE - Lung Cancer Europe c/o Fiduria AGBrueckfeldstrasse 16
Post Code: 3012
City: Bern
Country: SWITZERLAND
Phone: [object Object]

EU Office

Address: LuCE - Lung Cancer Europe c/o Fiduria AGBrueckfeldstrasse 16
Post Code: 3012
City: Bern
Country: SWITZERLAND
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: Fiduria provide external finance support and process all income and expenditure KPMP perform annual independent audit of finance closing statements Maxima web manage external communications on social media, website hosting, development and updates 4 part-time contractors Multiple contractors to support project development, conduct patient related surveys, printing, graphic design, meeting moderation, strategic planning advisors 2 x member meetings including Travel and hospitality for up to 40 members, plus 5 board and contracted staff Face to face educational masterclass for members Capacity building educational events, speakers and expert trainers Project costs

Membership Information

Members10 Percent: 0
Members25 Percent: 2
Members50 Percent: 2
Members75 Percent: 0
Members: 5
Members F T E: 2.5
Info Members: 5 contractors (4 part-time) Board of 7 voluntary persons

Structure

Structure Type: Structure
Is Member Of: ALK+ Belgium Association of the patients with respiratory failure and lung transplantation Bulgaria ALK Positive International Jedra Croatia Patientforeningen Lungekræft Suomen Syöpäpotilaat Suomen Keuhkosyöpäpotilaat (The Finnish Lung Cancer Patients) ALK FRANCE CANCER POUMON Association de L air 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 Community Health Association Romania 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 Lungecancerförbundet Stödet 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
Organisation Members: ECO EMA EPF IASLC ECL EPHA ELF/ERS WeCan ALL Can LCAM Coalition Cancer Patients Europe European Alliance for Personalised Medicine ESR