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 2020 - Dec 2020
Lobbyists (Full time equivalent)
8 Fte (8)
Lobbyists with EP accreditation
5
High-level Commission meetings
8
Lobbying Costs over the years
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Info
European Society for Paediatric Oncology (SIOP Europe / SIOPE)
EU Transparency Register
122803916413-09 First registered on 13 Mar 2015
Goals / Remit
SIOPE's vision is to be the single voice of the Paediatric Haematology Oncology Community in Europe, representing all stakeholders involved in the field and including in particular national societies as well as the clinical trial and research groups. In this way, SIOPE is fostering a spirit of a multidisciplinary and multiprofessional community engaged for childhood cancer together with parents and patients' advocacy groups.
SIOPE's principal goals and objectives are to:
- Promote better policies for children with cancer and their specific needs and to raise awareness of the numerous challenges faced by paediatric haematology oncology professionals to EU policymakers;
- Foster multi-centre and multinational clinical trials, forming a common platform for best practice guidelines;
- Improve access to innovative new drugs and treatments and to enhance regulatory paediatric drug approval through enhanced collaboration with relevant stakeholders;
- Elevate standard (...)Main EU files targeted
The main focus of SIOPE is on EU policies and programmes in the field of Health, as well as Research, Science and Innovation. Thus, SIOPE 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 and survivorship issues.
Areas of EU Health and Research of particular interest to SIOPE 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 SIOPE 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.
SIOPE also follows EU initiatives in the following broad areas: Social Affairs, Internal Market and Industry, Skills and Education, Digital agenda, Mobility, Human Rights and Children’s Rights, Justice, Disability, Youth issues, Employment, Consumers, EU budget and the European Semester process. During the COVID pandemic, providing guidance on safe access to early diagnosis and treatment continuity is an important priority.Address
Head Office
Clos Chapelle-aux-Champs 30 c/O BLSI
Brussels 1200 - Bte 1.30.30
BELGIUMEU Office
Clos Chapelle-aux-Champs 30 c/O BLSI
Brussels 1200 - Bte 1.30.30
BELGIUMWebsite
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People
Total lobbyists declared
8
Employment time Lobbyists 100% 8 Lobbyists (Full time equivalent)
8
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
5 accreditations were / are live (in bold) for the selected state of 03 Oct 2022
Name Start date End Date Ciara SHEEHAN 05 Jul 2023 04 Jul 2024 Sonja LADENSTEIN 13 Dec 2023 12 Dec 2024 Olga KOZHAEVA 31 Oct 2023 30 Oct 2024 Mr Marko Ocokoljić 02 Jun 2023 01 Oct 2023 Sonja LADENSTEIN 10 May 2023 01 Dec 2023 Ms Caroline GONZALEZ QUEIROZ SION 02 Mar 2023 11 Mar 2024 Agata KUSIAK 09 Nov 2022 25 Feb 2023 Mr Gilles Vassal 08 Oct 2022 07 Oct 2023 Ms Marta KANIA 17 Aug 2022 01 Apr 2023 Olga KOZHAEVA 08 Jun 2022 08 Jun 2023 Deyan Lazarov 01 Jun 2022 13 Apr 2023 Mr Marko Ocokoljić 01 Jun 2022 01 Jun 2023 Mr Andrea DEMADONNA 24 May 2022 22 May 2023 Olga KOZHAEVA 21 Nov 2019 21 Nov 2020 Mr Gilles Vassal 15 Nov 2019 14 Nov 2020 Ms Samira Essiaf 15 Nov 2019 14 Nov 2020 Ms Anne Blondeel 15 Nov 2019 14 Nov 2020 Ms Yocabed MELLESE 15 Nov 2019 14 Nov 2020 Ms Marta KANIA 15 Nov 2019 14 Nov 2020 Mr Andrea DEMADONNA 15 Nov 2019 14 Nov 2020 Mr Marko Ocokoljić 19 Sep 2019 01 Oct 2020 Ms Pamela KEARNS 28 Mar 2019 28 Mar 2020 Olga KOZHAEVA 30 Nov 2018 21 Nov 2019 Mr Gilles Vassal 30 Nov 2018 15 Nov 2019 Ms Samira Essiaf 30 Nov 2018 15 Nov 2019 Ms Yocabed MELLESE 30 Nov 2018 15 Nov 2019 Ms Marta KANIA 30 Nov 2018 15 Nov 2019 Ms Elena Botanina 30 Nov 2018 01 Dec 2019 Ms Anne Blondeel 10 Oct 2018 01 Nov 2019 Mr Andrea DEMADONNA 10 Oct 2018 01 Nov 2019 Ms Samira Essiaf 30 Jan 2018 30 Nov 2018 Ms Marta KANIA 20 Jan 2018 30 Nov 2018 Olga KOZHAEVA 30 Nov 2017 28 Nov 2018 Mr Gilles Vassal 30 Nov 2017 28 Nov 2018 Ms Elena Botanina 30 Nov 2017 29 Nov 2018 Ms Yocabed MELLESE 22 Nov 2017 21 Nov 2018 Ms Anne Blondeel 09 Jun 2017 30 May 2018 Ms Giulia Petrarulo 20 Mar 2017 19 Jan 2018 Ms Samira Essiaf 21 Feb 2017 19 Jan 2018 Olga KOZHAEVA 30 Nov 2016 30 Nov 2017 Mr Gilles Vassal 19 Jul 2016 12 Jul 2017 Ms Elena Botanina 21 Jun 2016 18 Jun 2017 Ms Giulia Petrarulo 20 Jan 2016 19 Jan 2017 Ms Samira Essiaf 20 Jan 2016 19 Jan 2017 Olga KOZHAEVA 27 Nov 2015 24 Nov 2016 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
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
https://siope.eu/activities/partnerships/
Member organisations
None declared
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2020 - Dec 2020
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
315,151€
Major funding types in closed year
EU funding, Grants, Donations, Member's contribution
Major contributions in closed year
Type Name Amount Contribution Amazon 48,072€ Contribution Membership Contributions 37,200€ Contribution Sponsorship, Education Workshop & Annual Conference 149,878€ Grant ERN-PAEDCAN (847032) Coordinator - Paediatric Rare Tumours Network - European Registry (EU 3HP) 12,500€ Grant IMI C4C Project (777389) (Collaborative network for European Clinical Trials for Children) (H2020) 151,236€ Grant PARTNER (777336) Participant - ERN-PAEDCAN Partner: Paediatric Rare Tumours Network - European Registry (EU 3HP) 9,059€ Major contributions in current year
Type Name Amount Grant IMI C4C Project (777389) (Collaborative network for European Clinical Trials for Children) (H2020) 115,450€ Grant TREL Project (952438) – Twinning in Research and Education to improve survival in Childhood Solid Tumours in Lithuania 31,671€ Other financial info
None declared
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
Cancer
Communication activities
The strategic vision of SIOPE is defined in the SIOPE STRATEGIC PLAN: A EUROPEAN CANCER PLAN FOR CHILDREN WITH CANCER' (available on the SIOPE website www.siope.eu). This Plan has been also summarised in the publication ‘Challenges for Children and Adolescents With Cancer in Europe: The SIOP-Europe Agenda’ (Pediatric Blood and Cancer, 2014). The SIOPE Strategic Plan Update 2021-2026 has been published in November 2021 to review the progress, reflect upon what has been achieved, what remains a priority and which new initiatives should be launched for the coming 5 years.
OTHER STRATEGIC PUBLICATIONS INCLUDE:
- ‘A European paediatric cancer mission: aspiration or reality?’, The Lancet Oncology, DOI:https://doi.org/10.1016/S1470-2045(19)30487-5
- ‘The COVID‐19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP‐E, SIOP‐PODC, IPSO, PROS, CCI, and St Jude Global’, Pediatric Blood & Cancer, DOI: https://doi.org/10.1002/pbc.28409
- Press Release: Children with cancer still left behind! SIOPE and Unite2Cure react to the Paediatric Regulation report of the European Commission (November 2017)
INITIATIVE-SPECIFIC PUBLICATIONS
- OVERARCHING AGENDA IN THE CONTEXT OF RARE CANCERS: The Joint Action on Rare Cancers (JARC, 2016-2019) formulated policy recommendations on rare cancers (including a separate work package on paediatric cancers) that can be implemented by Member States and in relevant EU initiatives.
- The Rare Cancer Agenda 2030: The Ten Recommendations from the Joint Action on Rare Cancers (September 2019) (NB: includes dedicated Paediatric Cancer Section at the end of each Chapter)
EU PROJECTS
- Joint Action on Rare Cancers: Leading WP9 on Childhood Cancers. Website: https://siope.eu/activities/eu-projects/eu-joint-action-rare-cancers-jarc/
- PanCareSurfUp: PanCare, Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies: www.pancaresurfup.eu
- ExPO-r-Net: European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment: www.expornet.eu
SIOPE was also involved in the EPAAC Joint Action (see above) and in the FP7 project ENCCA (European Network for Cancer Research in Children and Adolescents, www.encca.eu).
-SIOPE Essential Medicines for Children with Cancer Project: Coordinating Young SIOPE in collaboration with the Essential Medicines Steering Committee and the SIOPE European Clinical Trial Groups: https://siope.eu/Access-to-Medicines-Project
EU MANIFESTO: Before each round of the European Elections, SIOPE co-produces with its partners a comprehensive policy Manifesto of the paediatric oncology and haematology community. This is regularly endorsed by multiple MEPs https://siope.eu/manifesto2019/
EU EVENTS:
- Since 2011, SIOPE marks the International Childhood Cancer Day (15 Feb.) by organising an event at the European Parliament
- In Sept. 2014, SIOPE led the SIOPE-ENCCA Conference with the participation of EU stakholders that culminated in the endorsement of the SIOPE Strategic Plan towards continuous improvement in care and research
- In Nov. 2015, the SIOPE-MAC Launch: European Cancer Plan for Children and Adolescents took place at the European Parliament
- In Dec. 2019, SIOPE took part at European Parliament event contributing to a panel of the event “Challenges of cancer treatment – stakeholder's view’” hosted by an MEP with interest in cross-border healthcare at the European Parliament.
- In Sept,.2018, SIOPE – MAC event took place: ‘Celebrating 20 Years of Progress in Paediatric Haemato-Oncology in Europe’.
- In Jan. 2020, SIOPE organised a Special Policy Meeting: Towards Beating Childhood Cancer in Europe, in the European Parliament, hosted by several MEPs.
- In Sept. 2020 and 2021, SIOPE co-organised an event together with CCI Europe and PanCare, which was hosted by the MAC group as virtual webinar on ‘Childhood Cancer’ needs.Other activities
Active engagement with the MEPs Against Cancer Interest Group, the Special Committee on Beating Cancer of the European Parliament (BECA) and Intergroup on Cancer at the European Parliament.
SIOPE Manifesto 2019 supported by 26 MEPs.
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 challenges and needs in Europe.
Active dialogue with the European Commission including DG Research and DG Health.
Meetings
Meetings
8 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 -
Date 09 Jun 2020 Location Video-conferencing Subject EU Paediatric Cancer Research agenda and how the European Paediatric Cancer Community could best partake in and support relevant initiatives Cabinet Cabinet of Commissioner Mariya Gabriel Portfolio Digital Economy and Society Attending - Mariya Gabriel (Commissioner)
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Date 09 Jun 2020 Location Video-conferencing Subject EU Paediatric Cancer Research agenda and how the European Paediatric Cancer Community could best partake in and support relevant initiatives Cabinet Cabinet of Commissioner Mariya Gabriel Portfolio Innovation and Youth Attending - Mariya Gabriel (Commissioner)
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Date 26 May 2020 Location Brussels Subject VC meeting to discuss the EU's Cancer Plan and its objectives, cancer care and treatment during the COVID-19 pandemic Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
Other Lobbyists -
Date 21 Jan 2020 Location Brussels Subject Discussion on cancer Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Tove Ernst (Cabinet member)
- Stella Kyriakides (Commissioner)
Other Lobbyists -
Date 13 Dec 2018 Location Brussels Subject Health research and innovation Cabinet Cabinet of Commissioner Carlos Moedas Portfolio Research, Science and Innovation Attending - Robert Schröder (Cabinet member)
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Date 19 Sep 2017 Location Brussels Subject Paediatric Regulation evaluation report Cabinet Cabinet of Vice-President Jyrki Katainen Portfolio Jobs, Growth, Investment and Competitiveness Attending - Marika Lautso-Mousnier (Cabinet member)
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Date 12 Jun 2017 Location Brussels Subject Paediatric medicines Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Annika Nowak (Cabinet member)