Overview
Lobbying Costs
50,000€ - 99,999€
Financial year: Jan 2022 - Dec 2022
Lobbyists (Full time equivalent)
1.75 Fte (4)
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 7 years, LuCE has produced 7 reports and presented these at organized events in the European Parliament hosted by MEP's to highlight the level of inequity affecting those living with a lung cancer diagnosis in Europe and their communities. We consider the findings from these reports crucial, to support and drive the lung cancer agenda by increasing advocacy capabilities, elevate the patient voice, and hosting multi-stakeholder roundtables including EU Parliament health interest group members.
Address
Head Office
c/o ETOP C/O IBCSG - Effingerstrasse 40
Bern 3008
SWITZERLANDEU Office
c/o ETOP C/O IBCSG - Effingerstrasse 40
Bern 3008
SWITZERLANDWebsite
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People
Total lobbyists declared
4
Employment time Lobbyists 75% 1 50% 1 25% 2 Lobbyists (Full time equivalent)
1.75
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
4 contractors (part-time)
Board of 5 voluntary persons
In April 2023 we will have 2 additional part time contractors which have not been reflected in the numbers abovePerson 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
EPF
IASLC
ECL
EPHA
ELF/ERS
WeCan
ALL Can
LCAM Coalition
Cancer Patients Europe
European Alliance for Personalised Medicine
ESRMember organisations
ALK+ Belgium
ALK Positive International
Jedra Croatia
Patientforeningen Lungekræft
Suomen Syöpäpotilaat
Suomen Keuhkosyöpäpotilaat (The Finnish Lung Cancer Patients)
Association de L air
Patients en Reseau/Mon Reseau Cancer du Poumon
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
Stowarzyszenie Walki z Rakiem Płuca
Pulmonale
Community Health Association Romania
Federatia Asociatiilor Bolnavilor de Cancer din Romania
Društvo onkoloških bolnikov Slovenije
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
Athena. Women Against Cancer Ukraine -
Financial Data
Interests represented
Promotes their own interests or the collective interests of their members
Closed financial year
Jan 2022 - Dec 2022
Lobbying costs for closed financial year
50,000€ - 99,999€
Major contributions in closed year
None declared
Intermediaries for closed year
Name Amount membership activities 200,000€ - 299,999€ kpmg 0€ - 10,000€ 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€ 4 lung cancer europe individual contractors 50,000€ - 99,999€ 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€ Intermediaries for current year
Name fiduria Closed year Costs
50,000€ - 99,999€
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
The 2021 Lung Cancer Europe Public Awareness Campaign "Get Checked" which was translated in 12 European languages www.getchecked.eu. In 2022 we expanded the campaign to follow the call to action "Get Checked" to "Get Diagnosed" encouraging individuals with symptoms of lung cancer to seek a medical assessment and secure an early and accurate diagnosis increasing translations to 18 European Languages
November 2022 - Lung Cancer Europe 7th report on lung cancer "Challenges in the care pathway and preferences
of people with lung cancer in Europe" published and presented at a virtual MEP Mr. Tomislav Sokol, MEP and Deirdre Clune MEP and member of Special Committee on Beating Cancer
2022 - 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
CALLS TO ACTION:
Ensure access that supports the impact of lung cancer and treatment
Develop care plans and educational programmes with the aim to improve quality of life for people impacted by lung cancer
Advocate for new guidelines on Lung cancer screening programs - Putting guidelines in place that will allow Member States to set-up quality assured early detection programmes for lung cancer, as has already been the case with breast and colorectal cancers as a means to reduce lung cancer mortality.
Continued Funding for innovative lung cancer research - Ensure EU funds for research and innovation are provided to support the development of innovative and life-changing treatments for lung cancer patients.
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.
Utilize previously published Position Papers on lung cancer challenges via future projects
- Report on inequities in EU countries
- Workshops in the EU Parliament
- Collaboration with other NGO and clinical stakeholders in Europe on health issues
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.
Psychological Support
. Provide a document stating what the basic help from the national system should consist of.
· Ensure funds for training for medical healthcare professionals on how to share information with cancer patients.
. Reduce the stigma associated with lung cancerOther 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 - Tove Ernst (Cabinet member)
- Stella Kyriakides (Commissioner)