Overview
Lobbying Costs
95,245€
Financial year: Jan 2018 - Dec 2018
Lobbyists (Full time equivalent)
0.75 Fte (2)
Lobbyists with EP accreditation
0
High-level Commission meetings
2
Lobbying Costs over the years
-
Info
Youth Cancer Europe (YCE)
EU Transparency Register
988772631423-40 First registered on 02 May 2018
Goals / Remit
Youth Cancer Europe is made up of a network of youth cancer organisations from across Europe, focusing on the most urgent unmet needs of young people with cancer:
-- Working towards age appropriate and equal access to effective cancer treatment across Europe;
-- Improving long term follow-up and the quality of life of cancer survivors;
-- Creating a network of patient advocates to increase the political and regulatory influence of young people with cancer.
Youth Cancer Europe fosters direct contact between different collectives, ensuring that the voices of patients and survivors become a key part of how treatment and after-care is shaped across the continent. The organisation is committed to speak with a single representative voice of young people with cancer and together with other relevant stakeholders, through strategic partnerships in Europe, engage with EU policy-makers to influence European health and research policies.
Youth Cancer Europe prepares young people for the growing role of patients and patient advocates and raises awareness about issues affecting European youth with cancer.
Membership is open to young cancer patients and survivors aged 18-39 and the General Assembly of Members governs the organisation’s activities.
In 2017 five board members were elected to direct these actions:
Sarunas Narbutas (Lithuania), Chairman
Emmanuel Schipor (Romania)
Guy Tavori (Israel)
Ania Buchacz (Austria)
Tomas Farrington (United Kingdom)
The YCE Secretariat is the organisation’s executive arm, executing daily administrative tasks for the organization. Duties of a secretariat include the implementation of policies and projects as agreed upon by the General Assembly and the Steering Committee of Youth Cancer Europe.Main EU files targeted
Areas of EU Health and Research currently followed by Youth Cancer Europe are: Cancer; Rare diseases, Heath systems and services, Personalised medicine, Environment and Health, Public Health, Global Partnership
Youth Cancer Europe also follows the following EU initiatives and actions: Horizon 2020, Innovative Medicines Initiative, Patients’ rights in Cross-border healthcare, European Reference Networks, eHealth, Health Technology Assessment, Health systems performance assessment as well as initiatives in the areas of Promoting good health, Nutrition and physical activity and Mental health and the legislative area of Pharmaceuticals and medical devices.Address
Head Office
Calea Manastur 42B
Cluj-Napoca
ROMANIA -
People
Total lobbyists declared
2
Employment time Lobbyists 50% 1 25% 1 Lobbyists (Full time equivalent)
0.75
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
0 accreditations were / are live (in bold) for the selected state of 09 Oct 2019
Name Start date End Date Ms Katalin RIZVINE LEHOCZKY 04 Sep 2018 01 Sep 2019 Complementary Information
None declared
Person in charge of EU relations
Mr SARUNAS NARBUTAS (Chairman)
Person with legal responsibility
Ms KATALIN RIZVINE LEHOCZKY (Executive Director)
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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
None declared
Member organisations
www.youthcancereurope.org/network/
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Financial Data
Closed financial year
Jan 2018 - Dec 2018
Lobbying costs for closed financial year
95,245€
Other financial info
None declared
-
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
None
Communication activities
Relevant projects:
Youth Cancer Europe Open Space Summit 2014, Bucharest
Youth Cancer Europe Advocacy Masterclass 2015, Cluj-Napoca
Youth Cancer Europe @ Untold Music Festival manifestation 2015
Youth Cancer Europe Patient Summit 2017, Vilnius
YCE Structured Training on the Fundamentals of EU Policymaking, 2018 Brussels
European Parliament policy event on financial discrimination of long term cancer survivors, October 2018, Brussels
Youth Cancer Europe Leadership Summit, July 2019, Budapest
European Parliament policy event on cross border health, November 2019, Brussels
Relevant PR & Communication Activities as well as publications:
Open Space Summit Key Outcomes Report 2014 December
The Role of Youth in Cancer Policy, YouTube videos since 2016
Young cancer patients advocate for improved care September 5, 2017 article in The BMJ
Youth Cancer Europe: White Paper, October 2018Other activities
None declared
Meetings
Meetings
2 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 23 May 2018 Location Brussels Subject Actions on Cancer, access to care Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Alina Timofte (Cabinet member)
- Arunas Vinciunas (Cabinet member)