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)
2 Fte (3)
Lobbyists with EP accreditation
0
High-level Commission meetings
1
Lobbying Costs over the years
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Info
PanCare
EU Transparency Register
755773342680-71 First registered on 11 May 2021
Goals / Remit
Our mission is to ensure equal access to optimal long-term care and to improve quality of life for every child and adolescent in Europe after their cancer treatment. Survival rates in childhood cancer are increasing. Although this is a great success, up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care.We are a multidisciplinary pan‐European network of professionals, survivors and their families.
We work on long-term follow-up care, guidelines and are a resource of research based information concerning all late side-effects of childhood and adolescent cancer treatment. An important aim of PanCare is to work with the European Community to increase awareness and research about childhood cancer survivors.Main EU files targeted
PanCare aims to improve quality of life after survival of childhood and adolescent cancer.
The main focus of PanCare on EU policies and programmes are in the field of Health, as well as Research, Science and Innovation. Thus, PanCare engages in ‘oncopolicy’: a planned and sustained interaction with EU policy-makers and other stakeholders to anticipate and proactively shape EU health and research policies on childhood cancer survivorship issues.
Areas of EU Health and Research of particular interest to PanCare are Cancer; Rare Cancers; Rare Diseases; Cancer Information Systems; Access to Healthcare; Access to Medicines; Innovative Treatments; Essential medicines,
Quality of (Health)Care; European Reference Networks.
Specific legislative and related implementation acts that PanCare follows include: Europe’s Beating Cancer Plan, HorizonEurope, Health Programme & EU4Health, Europe’s Pharmaceutical Strategy, Paediatric Regulation,
Orphan Regulation, follow-up to Joint Actions on Rare Cancers (JARC) as well as CanCon Joint
Action and EPAAC Joint Action, Cross-Border Healthcare Directive, Innovative Medicines Initiative, etc.Address
Head Office
Jacobus Bellamylaan 16
Bussum 1401 AZ
NETHERLANDSEU Office
Jacobus Bellamylaan 16
Bussum 1401 AZ
NETHERLANDSWebsite
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People
Total lobbyists declared
3
Employment time Lobbyists 75% 2 50% 1 10% 2 Lobbyists (Full time equivalent)
2
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
We are a network of volunteers, so much more members are involved in the activities described under heading 9. But the PanCare members are not paid for their voluntary work.
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
https://www.pancare.eu/partners/
Member organisations
Only natural persons can be a member, so no organisations are members
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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
117,000€
Major funding types in closed year
Donations, Member's contributions, EU funding
Major contributions in closed year
Type Name Amount Grant EU4Health (smartCARE) 45,825€ Grant EU4Health (EU-CAYAS-NET 40,015€ Grant Horizon 2020 (PanCareSurPass) 23,315€ Other financial info
None declared
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EU Structures
Groups (European Commission)
None declared
Groups (European Parliament)
Cancer
Communication activities
EU-funded research projects and synergies with EU-funded networks:
PanCare projects:
PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies (PanCareSurFup, FP7- funded): the PanCareSurFup consortium consisted of 16 European institutions in 11 countries, and carried out research studies into late effects of treatment for cancer, established guidelines for follow-up, and disseminated the results and provided training and workshops for stakeholders.
PanCare Studies in Fertility and Ototoxicity to Improve Quality of Life after Cancer during Childhood, Adolescence and Young Adulthood (PanCareLIFE, FP7-funded): PanCareLIFE was a 5-year (2013-8) EU Framework 7 Programme in the Health Theme that studied the impact of treatment regimes on the long-term health of childhood cancer survivors. Specifically, PanCareLIFE evaluated the risks of impairments in female fertility, in hearing, and in quality of life. PanCareLIFE also developed two guidelines for fertility preservation, and will disseminate widely the results from this project.
PanCareFollowUp: Novel, patient-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for survivors and caregivers (PanCareFollowUp, EU-horizon 2020 funded): PanCareFollowUp is an EU-funded project looking at how to best deliver survivorship care to survivors of childhood and adolescent cancer in Europe. The aim of PanCareFollowUp is to deliver care according to recently developed guidelines using an innovative model for person centred care that empowers survivors and supports self-management
PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve person-centred care for childhood cancer survivors (PanCareSurPass, EU-Horizon 2020 funded): PanCareSurPass is an EU-funded project looking at how to more widely implement the digital Survivorship Passport (SurPass) to improve survivorship care for survivors of childhood and adolescent cancer in Europe. PanCareSurPass will develop, test and implement the SurPass in participating countries and will develop material to support implementation in other countries
PanCare partner projects
European Network for Cancer Research in Children and Adolescents (ENCCA, FP7-funded): In the ENCCA project the survivorship passport was developed, which provides survivors and HCPs with access to a detailed medical history
European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-Net FP7-funded): ExPO-r-Net further developed the SurPass, as well as translated recommendation brochures
European Reference Network on Paediatric Cancer (ERN PaedCan, EU Health-funded): The ERN aims to facilitate long-term follow-up and implement tools like the SurPass. Through our common partners, we will share knowledge and exploit synergies. The ERN CPMS will also be used to support clinical teams delivering the PanCareFollowUp Care intervention
EU Joint Action on Rare Cancers (JARC, EU Health-funded, SIOP-E, CCI Europe, PanCare): PanCare led on survivorship issues and made recommendations on models of care for survivors, including long-term follow-up, transition to adult care, and the use of the SurPass
UNICA4EU (European Union’s Call for Pilot Projects and Preparatory Actions (PPPA), SIOPE): map the current landscape of Artificial Intelligence (AI) applications for Childhood Cancer to understand how AI can help improve care pathways in the EU
EU-CAYAS-NET (EU4Health, partner): European Network of Youth Cancer Survivors to map the existing resources that are helpful to young cancer patients, survivors and their caregivers, to create new European guidelines and empower cancer survivors to advocate for their rights and needs
SmartCARE (EU4Health, partner) WP-lead. smartCARE is developing a ‘Cancer Survivor Smart Card’. This digital tool decreases the communication gap between survivors and health and social-care providersOther activities
SIOPE, CCI-E and PanCare ‘Gold Ribbon Campaign’ on Childhood Cancer Awareness Month in 2020.
European Parliament was lit in ‘gold’ from 1. to 7. of September 2020 in honour of ‘Childhood Cancer Awareness Month’.
Long term cooperation and active dialogue with wide range of MEPs on childhood cancer survivor challenges and needs in Europe.
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 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