Overview
Lobbying Costs
500,000€ - 599,999€
Financial year: Jan 2023 - Dec 2023
Lobbyists (Full time equivalent)
2.5 Fte (5)
Lobbyists with EP accreditation
0
High-level Commission meetings
1
Lobbying Costs over the years
-
Info
Lung Cancer Europe (LuCE)
EU Transparency Register
112188222754-11 First registered on 21 Jul 2016
Goals / Remit
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 EuropeMain EU files targeted
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.
Address
Head Office
LuCE - Lung Cancer Europe c/o Fiduria AG Brueckfeldstrasse 16
Bern 3012
SWITZERLANDEU Office
LuCE - Lung Cancer Europe c/o Fiduria AG Brueckfeldstrasse 16
Bern 3012
SWITZERLANDWebsite
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People
Total lobbyists declared
5
Employment time Lobbyists 100% 1 50% 2 25% 2 Lobbyists (Full time equivalent)
2.5
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
5 contractors (4 part-time)
Board of 7 voluntary personsPerson in charge of EU relations
Data not provided by Register Secretariat due to GDPR
Person with legal responsibility
Data not provided by Register Secretariat due to GDPR
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
ECO
EMA
EPF
IASLC
ECL
EPHA
ELF/ERS
WeCan
ALL Can
LCAM Coalition
Cancer Patients Europe
European Alliance for Personalised Medicine
ESRMember organisations
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 -
Financial Data
Interests represented
Promotes their own interests or the collective interests of their members
Closed financial year
Jan 2023 - Dec 2023
Lobbying costs for closed financial year
500,000€ - 599,999€
Major contributions in closed year
None declared
Intermediaries for closed year
Name Amount multiple external contractors for project support 50,000€ - 99,999€ lung cancer report 50,000€ - 99,999€ lung cancer europe access to treatment atlas 50,000€ - 99,999€ fiduria 25,000€ - 49,999€ maxima web 25,000€ - 49,999€ external conference attendance 25,000€ - 49,999€ get checked public awareness campaign 25,000€ - 49,999€ kpmg 0€ - 10,000€ external advisors & legal 0€ - 10,000€ membership activities 200,000€ - 299,999€ contractors 100,000€ - 199,999€ Intermediaries for current year
Name fiduria Closed year Costs
500,000€ - 599,999€
Other financial info
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 -
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
Cancer
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.Other activities
None declared
Meetings
Meetings
1 meetings found. Download meetings
The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.
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Date 07 Aug 2023 Location online Subject Online meeting with Lung Cancer Europe on Europe’s Beating Cancer Plan Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
- Tove Ernst (Cabinet member)