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 2022 - Dec 2022
Lobbyists (Full time equivalent)
5.25 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 to cure children and adolescents with childhood cancer with no- or as few as possible long-term health problems and late-effects.
To reach its vision, CCI Europe is working in close collaboration 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.
Furthermore, CCI-E engages in oncopolicy affairs extensively, having a planned and sustained interaction with EU policy-makers and other stakeholders to anticipate and proactively shape EU health and research policies and legislations 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; European Reference Networks (such as ERN PaedCan).
Specific legislative and related implementation acts that CCI-E actively monitors and influences include: Horizon Europe (Cancer Mission), Hoizon 2020, Europe’s Beating Cancer Plan, Pharmaceutical Strategy for Europe, the revision of the Paediatric and Orphan Regulations, 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 Strategyetc.
Indeed, CCI-E regularly monitors and influences medicine policy with evidence-based content, especially the upcoming revision of legislation of medicines for children and rare diseases for which CCI Europe has been responding to subsequent public consultations.
Finally, CCI-E monitors and, when relevant to childhood cancers, engages in EU initiatives in the additional broad areas such as: Social Affairs, Internal Market and Industry, Skills and Education, Digital agenda, Mobility, Human Rights and Children’s Rights, Justice, Disability, Youth issues, Data Protection, Employment, Consumers, EU budget and the European Semester process.
To act and advocate on the European level, CCI-E has regular proactive engagement with the Special Committee on Beating Cancer of the EU Parliament (BECA) as well as with MEPs from the ENVI Committee and more specifically the new SANT Subcommittee.
In addition, the 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 MEPs and DG’s 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
Handelskai 94-96 / 23rd floor
Wien 1200
AUSTRIAEU Office
Handelskai 94-96 / 23rd floor
Wien 1200
AUSTRIAWebsite
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People
Total lobbyists declared
9
Employment time Lobbyists 100% 3 50% 3 25% 3 Lobbyists (Full time equivalent)
5.25
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
1 accreditations were / are live (in bold) for the selected state of 03 May 2024
Name Start date End Date 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 https://www.europeancancer.org/
EURODIS https://www.eurordis.org/Member organisations
https://ccieurope.eu/network/
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2022 - Dec 2022
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
837,330€
Major funding types in closed year
Member's contribution, Donations, Grants, EU funding
Major contributions in closed year
Type Name Amount Contribution EU Project EU-CAYAS-NET 370,636€ Contribution EU Operating Grant 2022 102,506€ Contribution EU Project 4.UNCAN.eu 83,813€ Contribution Fondatioun Kriibskrank Kanner 100,000€ Grant EU4Health Operating Grant 101083204 102,506€ Major contributions in current year
Type Name Amount Grant EU Operating Grant 2023 101,955€ Grant EU project PanCareSurPass 12,662€ Grant EU project ProtectEU 539€ Grant EU project SmartCARE 9,425€ Other financial info
None declared
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EU Structures
Groups (European Commission)
none
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).
Since September 2019, the European Parliament has 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 the framework of Gold September, CCI-E co-organises with SIOP Europe a yearly dedicated policy event, hosted by a member of the MAC group in an online format.
In addition, 15 February - International Childhood Cancer Day aims to raise awareness about childhood cancer. Organised by SIOP Europe in close partnership with CCI Europe, ICCD is an annual policy event hosted by a leading childhood cancer supporter.
IMPORTANT PUBLICATIONS INCLUDE:
- 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
PAEDIATRIC AND ORPHAN REGULATIONS: CCI-E regularly monitor and influence medicine policy with evidence-based content, especially the upcoming revision of legislation of medicines for children and rare diseases where we are responding to subsequent consultations.
EU PROJECTS:
- EU-CAYAS-NET: Coordinators https://beatcancer.eu/
- PanCareSurPass: PanCare Survivorship Passport, partners in WP1, WP2, WP3, WP4 and WP6. http://www.survivorshippassport.org/
- PanCareFollowUp: https://pancarefollowup.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
- ALADDIN https://aladdin-education.eu/
- UNICA4EU https://unica4.eu/
- UNCAN.eu https://uncan.eu/
- ERN PaedCAN https://paedcan.ern-net.eu/
Full list of CCI Europe projects is here: https://ccieurope.eu/projects/
Previous EU projects:
- 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
List of contributions to roadmaps:
- Europe´s Beating Cancer Plan
- Pharmaceutical Strategy for Europe
- Medicines for Children and Rare Diseases
- EU Cross-Boarder Healthcare Directive
List of contributions to public consultations:
- Europe´s Beating Cancer Plan
- Pharmaceutical Strategy for Europe
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 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