Overview
Lobbying Costs
450,364€
Financial year: Jan 2015 - Dec 2015
Lobbyists (Full time equivalent)
2.5 Fte (4)
Lobbyists with EP accreditation
3
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 standards of care in paediatric haematology oncology and to develop work on the European guidelines;
- Foster integration of European research in the field to maximise the insight and disease-based knowledge and to prepare for the next generation of improved treatments;
- Support, facilitate and increase professional medical, scientific and educational co-operation and training across Europe, in particular by supporting exchanges and meetings between doctors, nurses and other professionals involved in the care of children and teenagers with cancer;
- Integrate patients and parents and bridge the gap between family groups, professionals and policy makers in Europe.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; Quality of (Health)Care; European Reference Networks.
Specific legislative and related implementation acts that SIOPE follows include: Horizon 2020, Health Programme, Clinical Trials Regulation, Data Protection Regulation, Paediatric Medicines Regulation, Orphan Drug Regulation, CanCon Joint Action, EPAAC Joint Action (follow up), 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.Address
Head Office
Avenue E. Mounier 83
Brussels 1200
BELGIUM -
People
Total lobbyists declared
4
Employment time Lobbyists 100% 1 50% 3 Lobbyists (Full time equivalent)
2.5
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
3 accreditations were / are live (in bold) for the selected state of 17 Jun 2016
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
The Secretariat of SIOPE is composed of:
- Secretary General: Samira Essiaf (100% SIOPE)
- Public Affairs Coordinator: Olga Kozhaeva (50 % ECCO and 50 % SIOPE)
- Communication Coordinator: Giulia Petrarulo (40% SIOPE)
- Administrative Assistant: Elena Botanina (50 % SIOPE)Person in charge of EU relations
Ms Olga Kozhaeva (Public Affairs Coordinator)
Person with legal responsibility
Ms Samira Essiaf (Secretary General)
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
http://www.siope.eu/activities/partnerships/
Member organisations
The SIOPE membership is based on the European National Paediatric Haemato-Oncology Societies or groups (‘NaPHOS’), which encourage their members to become part of the SIOPE network. In countries without NaPHOS, medical institutions and treatment centres specialised in paediatric cancer care can join SIOPE. Such centres can allow the paediatric haemato-oncology professionals in their institute to also become members of SIOPE. To ensure an open and continuously growing community, oncology professionals who are not members of a NaPHOS can also join SIOPE.
Members contribute an annual membership fee of EUR 20.
List of members: http://www.siope.eu/about-siope/members/ -
Financial Data
Closed financial year
Jan 2015 - Dec 2015
Lobbying costs for closed financial year
450,364€
EU grant income for closed financial year
242,198 € (Source: RTD - DG for Research and Innovation - Research: Framework Programme n°7; SANCO - DG for Health and Consumers - Health Programme 2008-2013)
Other financial info
None declared
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EU Structures
Groups (European Commission)
European Commission Expert Group on Cancer Control:
Represented by ECCO (European CanCer Organisation), of which SIOPE is member.ACC
Paediatric Committee (PDCO) at the European Medicines Agency (EMA):
SIOPE Board Members Riccardo Riccardi and Maria Grazia Valsecchi are member and alternate member, respectively, of PDCO – a body responsible for assessing the content of paediatric investigation plans and adopting opinions on them.Groups (European Parliament)
None
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).
OTHER STRATEGIC PUBLICATIONS INCLUDE:
- G. Vassal et al., ‘Creating a unique, multi-stakeholder Paediatric Oncology Platform to improve drug development for children and adolescents with cancer‘, EJC, doi: http://dx.doi.org/10.1016/j.ejca.2014.10.029
- M. Schrappe: Trialling the future in paediatrics, Pan-European Networks – Horizon 2020, pp 164-165
- ENCCA cares, Pan-European Networks – Horizon 2020, pp 168-169
INITIATIVE-SPECIFIC PUBLICATIONS
- CLINICAL TRIALS REGULATION: SIOPE intervened in the EU process leading to the adoption of the CTR and published position papers and joint statement contributions. Currently, SIOPE is involved in the discussions that followed the adoption of the Regulation and has provided responses to several consultations by EMA in this regard. http://www.siope.eu/news-and-resources/position-papers/
- PAEDIATRIC REGULATION: SIOPE is monitoring and producing policy and evidence-based content on the implementation of the Regulation and its upcoming evaluation and possible revision and has contributed to a number of EU consultations: http://www.siope.eu/news-and-resources/position-papers/
- DATA PROTECTION REGULATION: The SIOPE position statement on it can be found here: http://www.siope.eu/news-and-resources/position-papers/
- EUROPEAN PARTNERSHIP FOR ACTION AGAINST CANCER (EPAAC): SIOPE led the preparation of the ‘European Standards of Care for Children with Cancer’, integrated as a deliverable in the EPAAC Joint Action. The Standards are now available in 17 languages, and SIOPE advocates to apply them across Europe: http://www.siope.eu/european-research-and-standards/standards-of-care-in-paediatric-oncology/
EU PROJECTS
SIOPE is part of the following EU-funded projects:
- 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).
EU MANIFESTO: Before the European Elections, SIOPE co-produced the Manifesto of the paediatric oncology and haematology community, endorsed by 20 Members of the European Parliament: http://www.siope.eu/news-and-resources/conferences-and-events/iccd/manifesto-paediatric-oncology-haematology-community/.
EU EVENTS:
- Since 2011, SIOPE marks the International Childhood Cancer Day (15 February) by organising an event at the European Parliament: http://www.siope.eu/news-and-resources/conferences-and-events/iccd/
- In September 2014, SIOPE led the SIOPE-ENCCA Conference ‘Joining Efforts for a Brighter Future for Children and Adolescents with Cancer – The European Roadmap to Horizon 2020’. It was a multi-stakeholder event with representatives of EU institutions that endorsed the SIOPE Strategic Plan towards continuous improvement in care and research: http://www.siope.eu/news-and-resources/conferences-and-events/siope-encca-conference-2014/
- In November 2015, the SIOPE – MAC Launch: European Cancer Plan for Children and Adolescents took place at the European Parliament: http://www.siope.eu/news-and-resources/conferences-and-events/siope-mac-launch-european-cancer-plan-for-children-and-adolescents/
- In February 2016, SIOPE took part in the World Cancer Day Stand at the European ParliamentOther activities
Active engagement with the MEPs Against Cancer Interest Group.
Long-term cooperation with MEP Glenis Willmott (S&D, UK).
SIOPE Manifesto supported by 20 MEPs.
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)