European Society for Paediatric Oncology

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Registration as it was on 28 Oct 2023
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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)

9 Fte (9)

Lobbyists with EP accreditation

5

High-level Commission meetings

8

Lobbying Costs over the years

  • Info

    European Society for Paediatric Oncology   (SIOP Europe / SIOPE)

    EU Transparency Register

    122803916413-09 First registered on 13 Mar 2015

    Goals / Remit

    The European Society for Paediatric Oncology (SIOP Europe, or SIOPE) is the single united European organization representing healthcare and research professionals in the field of childhood cancers, with over 2,500 members in 35 countries.

    The goal is to ensure the best possible care and outcomes for all children and young people with cancer in Europe.

    The objectives are to increase cure rates, enhance survivors’ quality of life, and tackle inequalities.

    Remit:

    - Research: e.g., serves as the common European platform for paediatric haemato-oncology clinical trials
    - Care: e.g., coordinates the development of European standards of care & fosters equal access
    - Education & Training: e.g., hub for learning & exchange on state-of-the-art science, clinical practice, and public policy
    - Advocacy: e.g., engages with the EU to foster an enabling policy environment for childhood cancer control

    SIOPE is also involved in the global health agenda via SIOP (international).

    Main EU files targeted

    SIOPE focuses on policies and programmes addressing healthcare organization & delivery and health research, in particular in the areas of cancer and rare diseases.

    Main EU initiatives followed as of November 2023
    - Europe’s Beating Cancer Plan
    - EU Cancer Mission
    - Pharmaceutical Strategy for Europe
    - European Reference Networks
    - Horizon Europe
    - EU4Health

    Main EU legislative files followed as of November 2023
    - Regulation and Directive on Medicinal products for human use
    - Regulation on medicinal products for paediatric use
    - Regulation on orphan medicinal products
    - Regulation on advanced therapy medicinal products
    - Regulation on health technology assessment
    - European Health Data Space Regulation
    - General Data Protection Regulation
    - Directive on patients’ rights in cross-border healthcare
    - Regulation on substances of human origin
    - Clinical trials Regulation

    SIOPE also follows EU initiatives in other relevant areas such as Employment, Social Affairs and Inclusion [e.g., European Pillar of Social Rights], International Partnerships [e.g., EU Global Health Strategy], Justice and Fundamental rights [e.g., EU Strategy on the Rights of the Child].

    Address

    Head Office
    Clos Chapelle-aux-Champs 30 c/O BLSI
    Brussels 1200 - Bte 1.30.30
    BELGIUM
    EU Office
    Clos Chapelle-aux-Champs 30 c/O BLSI
    Brussels 1200 - Bte 1.30.30
    BELGIUM

    Website

  • People

    Total lobbyists declared

    9

    Employment timeLobbyists
    100%9

    Lobbyists (Full time equivalent)

    9

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    5 accreditations were / are live (in bold) for the selected state of 14 Jul 2024

    Name Start date End Date
    Ciara Kathleen Sheehan 04 Jul 2024 04 Jul 2025
    Caroline Gonzalez Queiroz Sion 21 Jun 2024 21 Jun 2025
    Rachele Vedovelli 21 Jun 2024 18 Dec 2024
    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

    Latest information to be updated

    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

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    https://siope.eu/activities/partnerships/

    Member organisations

    None declared

  • 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

    315,151€

    Major funding types in closed year

    Donations, Member's contribution, EU funding, Grants

    Major contributions in closed year

    TypeNameAmount
    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

    TypeNameAmount
    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

    2022 budget info will be updated shortly

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    Communication activities

    PUBLICATIONS

    Paediatric cancer on the European agenda

    - The SIOPE Strategic Plan: A European Cancer Plan for Children and Adolescents with Cancer:
    https://siope.eu/european-strategic-plan/

    - The SIOPE Strategic Plan Update 2021-2026: https://siope.eu/european-strategic-plan/

    - Vassal G et al. The SIOPE Strategic Plan: A European Cancer Plan for Children and Adolescents. Journal of Cancer
    Policy 2016. https://doi.org/10.1016/j.jcpo.2016.03.007

    - Vassal G et al. Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda. Pediatr
    Blood Cancer 2014. https://doi.org/10.1002/pbc.25044

    Cancer Mission

    - Kearns PR et al. European paediatric cancer mission: aspiration or reality? Lancet Oncol 2019.
    https://doi.org/10.1016/S1470-2045(19)30487-5

    Access to medicines

    - Vassal G et al. Access to essential anticancer medicines for children and adolescents in Europe. Ann Oncol 2020.
    https://doi.org/10.1016/j.annonc.2020.12.015

    - Otth M et al. Essential medicines for childhood cancer in Europe: a pan-European, systematic analysis by SIOPE.
    Lancet Oncol 2022. https://doi.org/10.1016/S1470-2045(22)00623-4

    - Schoot RA et al. Market access to new anticancer medicines for children and adolescents with cancer in Europe.
    European Journal of Cancer 2022. https://doi.org/10.1016/j.ejca.2022.01.034

    - Vassal G et al. Impact of the EU Paediatric Medicine Regulation on new anti-cancer medicines for the treatment of
    children and adolescents. Lancet Child Adolesc Health 2023. https://doi.org/10.1016/S2352-4642(22)00344-3

    Health data/GDPR

    - Vassal G et al. The impact of the EU General Data Protection Regulation on childhood cancer research in Europe.
    Lancet Oncol 2022. https://doi.org/10.1016/S1470-2045(22)00287-X

    Care organization and delivery

    - Kowalczyk JR et al. Towards reducing inequalities: European Standards of Care for Children with Cancer. Eur J
    Cancer 2014. https://doi.org/10.1016/j.ejca.2013.11.004

    - Janssens GO et al. Recommendations for the organisation of care in paediatric radiation oncology across Europe: a
    SIOPE-ESTRO-PROS-CCI-Europe collaborative project in the framework of the JARC. Eur J Cancer. 2019.
    https://doi.org/10.1016/j.ejca.2019.03.003

    Rare cancers

    - Joint Action on Rare Cancers (JARC), Rare Cancer Agenda 2030: ten recommendations from the EU joint action on
    rare cancers. Lecce: Youcanprint. 2019: 131 : https://siope.eu/media/documents/rare-cancer-agenda-2030.pdf
    [SIOPE was a co-author. See in particular sections on childhood cancer].

    CAMPAIGNS

    - European Elections: Manifesto of the paediatric oncology and haematology community [latest: https://siope.eu/manifesto2019/]

    - Gold September - Childhood Cancer Awareness Month: Presence at the European Parliament (EP), policy events

    - International Childhood Cancer Day (ICCD): Annual policy event at the EP

    EVENTS [SELECTED HIGHLIGHTS]

    - SIOPE ICCD annual event hosted by MEPs [topic 2023: Childhood cancer survivorship, 2022: GDPR in childhood cancer research,..]

    - SIOPE & MEPs Against Cancer (MAC) events [topic 2022-23: EU Pharmaceutical Legislation, 2021: Europe’s Beating Cancer Plan & Cancer Mission, …]

    - EP ENVI & BECA committee hearings: specialist contributions

    - European Commission workshops on Europe's Beating Cancer Plan & Cancer Mission: dissemination to members & broader community & specialist contributions

    - SIOPE Annual Meeting [https://siopeurope.eu/]

    Other activities

    None declared

  • 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.

    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.

    • 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)
    • 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)
    • 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)
    • 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)
    • Date 12 Jun 2017 Location Brussels
      Subject Paediatric medicines
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Annika Nowak (Cabinet member)
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