Overview
Lobbying Costs
250,000€
Financial year: Jan 2020 - Dec 2020
Lobbyists (Full time equivalent)
3.25 Fte (8)
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:
Create awareness of lung cancer
Access to the best possible treatment
Reduce mortality - early detection
Equality of care throughout EuropeMain EU files targeted
We work with our partner groups in Europe to support patients, survivors and caregivers, to raise awareness on the lack of funds for lung cancer and one of our main target is advocating for receiving an equal access to LC diagnostics and treatments and for receiving the best LC treatments across all EU countries. In the past 4 years, LuCE organized 4 events hosted by MEPs to highlight the big inequieties still persisting for European lung cancer patients. We still consider these topics crucial, and because no so many tangible steps ahead were made, we are ready to organize a new event in EU Parliament, a roundtable.
Address
Head Office
c/o ETOP C/O IBCSG -
Effingerstrasse 40
Bern 3008
SWITZERLAND -
People
Total lobbyists declared
8
Employment time Lobbyists 100% 1 50% 2 25% 5 Lobbyists (Full time equivalent)
3.25
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
None declared
Person 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
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
ECCO
ECPC
EPF
IASLC
ECL
EPHA
ELF/ERSMember organisations
Patientforeningen Lungekræft
Suomen Syöpäpotilaat
Association de L air
Patients en Reseau/Mon Reseau Cancer du Poumon
Bundesverband Selbsthilfe Lungenkrebs e.V.
Landesverband Baden-Württemberg für Lungenkrebskranke und deren Angehörige e.V
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
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
National Lung Cancer Forum for Nurses -
Financial Data
Closed financial year
Jan 2020 - Dec 2020
Lobbying costs for closed financial year
250,000€
Other financial info
nothing relevant
-
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
N/A
Communication activities
- 18/11/2014 " Lung Cancer Europe: reccommandations from patients and experts on lung cancer misperceptions" event organized by Lung Cancer Europe (LuCE)hosted by MEP Ms Liese
18/11/2014 Presentation and circulation of the first position paper in Lung Cancer
CALLS TO ACTION:
1) 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 cancer as a means to bring down patient mortality.
2) Continued Funding for Innovative Research
. Ensuring that EU funds for research and innovation are earmarked towards supporting the development of innovative and life-changing new treatments for lung cancer patients.
10/11/2015 "The future of the fight against lung cancer" Event organised by Lung Cancer Europe (LuCE) *
Hosted by Cristian Busoi, EPP MEP and Dr. Philippe de Backer, ALDE MEP
10 November |ROOM 6Q1| from 14.00 to 16.00
PANEL I - Novel research findings for lung cancer
PANEL II - Patients’ initiatives
PANEL III - Fighting lung cancer: the role of the EU vs measures needed at Member State level
10/11/2015 Presentation and circulation of the second position paper in Lung Cancer
CALLS TO ACTION:
1) 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.
· Improved training and knowledge among general practitioners. Because
2) 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.
Position Papers on lung cancer challenges
- Report on inequities in EU countries
- Workshops in the EU Parliament
- Collaboration with other NGO and clinical stakeholders in Europe on health issues
3) Research and development of new medicines
. Ensure funds continue to be available for research and innovation in the field of lung cancer.
· Avoid 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.
4)Psychological help
. 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.
16.11.2016- On November 16th 2016, event at the European Parliament (Brussels) to raise awareness among different stakeholders and get their commitment with lung cancer challenges. This event is held in collaboration with the Association of European Cancer Leagues (ECL) and it is hosted by MEP Alojz Peterle
November 2017. Launching at the European Parliament (Brussels) of our 2nd report: Disparities in diagnosis, care and treatment Access.
November 2018. Launching at the European Parliament (Brussels) of our 3rd report : Clinical trials and lung cancer.
November 2019. Launching at the European Parliament ( Brussels) of our 4th report: Early diagnosis and screening on 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)