Overview
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Lobbying Costs
None declared
Financial year: Jan 2023 - Dec 2023
Lobbyists (Full time equivalent)
6.75 Fte (9)
Lobbyists with EP accreditation
1
High-level Commission meetings
2
Lobbying Costs over the years
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Info
CCI Europe (CCI Europe)
EU Transparency Register
682126441400-50 First registered on 02 Mar 2021
Goals / Remit
The Vision of CCI Europe is for children and adolescents with childhood cancer to be cured with no, or as few as possible, long-term health problems and late-effects.
To reach its vision, CCI Europe is working with the medical and psychosocial professionals, academia, scientists, the civil society and private organisations all over Europe.
The Mission of CCI Europe is to unite parents, patients and survivors and advocate for their rights to:
- Improve the medical and psychosocial care for children and adolescents with cancer all over Europe
- Implement European Standards of Care to eliminate still existing inequalities
- Improve the quality of survivorship
The strategic vision on CCI Europe is outlined through CCI Europe`s Pillars. Read more about them here: www.ccieurope.eu/cci-europe-pillars/Main EU files targeted
CCI Europe (CCI-E) has a prominent focus on EU policies and programmes in the field of health as well as science, research and innovation.
This is why CCI-E engages in oncopolicy affairs extensively, having a sustained and regular interaction with EU policy-makers, such as the Members of the European Parliament, and other stakeholders, to anticipate and proactively help shaping EU health and research policies and legislation, on childhood cancer and survivorship issues.
Following are the areas of EU Health and Research which are of particular interest to CCI-E: Cancer; Rare Cancers; Rare Diseases; Cancer Information Systems; Cross-Border Health Care; Mental Health; Access to Healthcare; Access to Medicines; Innovative Treatments; Essential Medicines, Quality of (Health)Care; Survivorship, European Reference Networks (such as ERN PaedCan).
Specific legislative and related implementation acts that CCI-E actively monitors and influences include: the Pharmaceutical Package, Horizon Europe (Cancer Mission), Europe’s Beating Cancer Plan, EU4Health, follow-up to Joint Actions on Rare Cancers (JARC) as well as Cross-Border Healthcare Directive, Health Technology Assessment Regulation, European Health Data Space, European Care Strategy, etc.
MEPs Against Cancer (MAC) Interest Group has been a close partner of CCI Europe and SIOP Europe in promoting a more enabling policy environment for younger cancer patients and professionals serving them.
Finally, CCI-E, together with SIOPE, has a long-term close cooperation and fruitful dialogues with numerous DGs of the European Commission (e.g. DG Research, DG SANTE) on childhood cancer challenges and unmet medical needs in Europe through many events, conferences and meetings (e.g. International Childhood Cancer Day - ICCD event that is yearly organised by SIOPE in the European Parliament).Address
Head Office
Lerchenfelder Strasse 74Stiege 3/ Top 2
Wien 1080
AUSTRIAEU Office
Lerchenfelder Strasse 74Stiege 3/ Top 2
Wien 1080
AUSTRIAWebsite
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People
Total lobbyists declared
9
Employment time Lobbyists 100% 4 75% 2 50% 2 25% 1 Lobbyists (Full time equivalent)
6.75
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
1 accreditations were / are live (in bold) for the selected state of 25 Nov 2024
Name Start date End Date Teresa BASTOS PAIS 10 Oct 2024 09 Oct 2025 Teresa BASTOS PAIS 07 Oct 2023 04 Oct 2024 Complementary Information
This information include works of volunteers who contribute to the activities.
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
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
WeCAN https://wecanadvocate.eu/
ECO Patient Advisory Committee https://www.europeancancer.org/
EURORDIS https://www.eurordis.org/Member organisations
None declared
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2023 - Dec 2023
Lobbying costs for closed financial year
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Total organisational budget in closed year
454,460€
Major funding types in closed year
Donations, EU funding, Grants, Member's contributions
Major contributions in closed year
Type Name Amount Contribution EU4Health Operating Grant 2023 101124938 101,955€ Contribution EU project EU-CAYAS-NET 101056918EU 87,870€ Grant EU4Health Operating Grant 2023 101124938 101,955€ Grant EU4Health Operating Grant 2022 101083204 (balance) 24,773€ Grant EU project EU-CAYAS-NET 101056918 87,870€ Grant EU project PanCareSurPass 899999 12,662€ Grant smartCARE 101080048 9,424€ Grant Protect-Europe 101080046 539€ Other financial info
None declared
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EU Structures
Groups (European Commission)
None declared
Groups (European Parliament)
Cancer
Communication activities
EVENTS AND CAMPAIGNS
CCI-E together with SIOPE, the only pan-European organisation representing all professionals working in the field of childhood cancers, organise every year in September a joint campaign on Childhood Cancer Awareness Month (CCAM): part of which is a policy event hosted by MEP. This event in 2024 was titled "Why should childhood cancer should stay high on the EU agenda?”.
In the years from 2019 to 2023, the European Parliament has been lit up in gold, bringing major visibility to the persistent burden of childhood cancer – an important signal that children and adolescents with cancer should remain an important priority on the EU agenda. Initiated by parents, patients, and survivors of childhood cancer at the grassroots level, the campaign has today become a broadly endorsed initiative with a prominent global presence.
In addition, on February 15th - International Childhood Cancer Day (ICCD) - CCI-E together with SIOPE organises another policy event aiming at raising awareness on childhood cancer. This event is hosted by a leading childhood cancer supporter.
IMPORTANT PUBLICATIONS INCLUDE:
- CCI Europe and SIOP Europe Manifesto on the paediatric oncology & haematology community (February 2024) https://ccieurope.eu/manifesto-for-the-2024-european-elections/
- WHO Europe Report on Childhood Cancer Inequalities in Europe (March 2022)
- European Childhood Cancer Organisations’ Recommendations following the European Commission’s Evaluation of the Legislation for Medicines for Rare Diseases and Children and the launch of the Pharmaceutical Strategy for Europe, (updated in June 2022)
- The European Childhood Cancer Community calls for bold implementation of the European Care Strategy: Ensuring genuine support for young patients with life-threatening diseases, survivors and their family (November 2022)
- SIOPE, CCI-E & PanCare Position Paper: A Europe for Children & Adolescents with Cancer: Position paper of the European paediatric cancer community (November 2022)
- Essential medicines for childhood cancer in Europe: a pan-European, systematic analysis by SIOPE, The Lancet Oncology, Vol. 23, Issue 12, p.1537-1546, December 2022
EU CONSULTATIONS:
CCI-E regularly responds to EU consultations in the field of health, research, and innovation, in order to contribute with evidence-based content.
EU PROJECTS:
- EU-CAYAS-NET: Coordinator, https://beatcancer.eu/
- smartCARE: https://www.europeancancer.org/eu-projects/impact/smartcare.html
- PanCareSurPass: PanCare Survivorship Passport, http://www.survivorshippassport.org/
- ALADDIN https://aladdin-education.eu/
- ERN PaedCAN https://paedcan.ern-net.eu/
Full list of CCI Europe projects is here: https://ccieurope.eu/projects/
Previous EU projects:
- PanCareFollowUp: https://pancarefollowup.eu/
- UNICA4EU https://unica4.eu/
- UNCAN.eu https://uncan.eu/
- Joint Action on Rare Cancers: Leading WP9 on Childhood Cancers: www.jointactionrarecancers.eu
- PanCareSurfUp: PanCare, Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies: www.pancaresurfup.eu
- PanCareLife: www.pancarelife.eu
- ExPO-r-Net: European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment: www.expornet.eu
- ENCCA: European Network for Cancer Research in Children and Adolescents: www.encca.eu
OTHER PROJECTS:
- PPIE: “Patient and Public in Involvement and Engagement”, tailoring research to patients’ and survivors’ needs to improve quality of life, funded by Ludwig Boltzmann Gesellschaft (LBG)Other 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.
1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.
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Date 30 Jan 2024 Location Brussels Subject Meeting of Commissioner Kyriakides with Childhood Cancer International Europe on Europe’s Beating Cancer Plan Cabinet Cabinet of Commissioner Stella Kyriakides Attending - Tove Ernst (Cabinet member)
- Stella Kyriakides (Commissioner)
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Date 18 May 2021 Location Brussels, virtual Subject Exchange of views on the implementation of Europe’s Beating Cancer Plan in paediatric oncology Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
Other Lobbyists