European Patients' Forum (EPF)

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Registration as it was on 16 Mar 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 2021 - Dec 2021

Lobbyists (Full time equivalent)

4 Fte (4)

Lobbyists with EP accreditation

5

High-level Commission meetings

25

Lobbying Costs over the years

  • Info

    European Patients' Forum (EPF)   (EPF)

    EU Transparency Register

    61911227368-75 First registered on 07 Dec 2011

    Goals / Remit

    The European Patients’ Forum is a not-for-profit, independent umbrella organisation of patients’ organisations active in the field of European public health and health advocacy. EPF’s vision is a Europe where patient organisations are valued partners in creating equitable, person-centered, accessible, and sustainable healthcare systems, based on patients’ unique expertise. Our mission is to advance the interests of patients and patients’ communities by strengthening their collective impact across Europe through effective advocacy, education, empowerment, and partnership.

    As per our new Strategic Plan (https://www.eu-patient.eu/about-epf/about-us/), our strategic goals are 1:Shaping A New European Agenda For Patients; 2:Meaningful Patient Involvement In Co-Creating Better Health Policy, Practice, Research And Education; 3:Digital Transformation That Delivers For Patients; 4:Accessing The Healthcare We Need With No Discrimination; 5:Strengthening Patient Communities Across Europe

    Main EU files targeted

    The European Patients’ Forum (EPF) leads patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients’ lives.

    Our 2023 work plan focuses on three key objectives: (1) patient involvement and empowerment, (2) sustainable health systems for all, and (3) effective and patient-centred research and regulatory frameworks. Our work plan includes policy and advocacy, project, and capacity-building activities.

    A full overview of the year’s work plan can be found here: http://www.eu-patient.eu/library/Other-Material/

    As per our Strategic plan, our policy activity will focus on 1: Shaping A New European Agenda For Patients; 2: Meaningful Patient Involvement In Co-Creating Better Health Policy, Practice, Research And Education; 3: Digital Transformation That Delivers For Patients; 4: Accessing The Healthcare We Need With No Discrimination; 5: Strengthening Patient Communities Across Europe

    In terms of policy priorities for 2023, EPF will mainly focus on: the ongoing review of the EU pharmaceutical legislation, including antimicrobial resistance and unmet needs; EU legislation on medical devices (MDR/IVDR); the EU4Health Programme and patient involvement in EU health-related research projects; digital health (e.g. European Health Data Space, artificial intelligence) and the 2024 parliamentary elections. EPF will also bring patients’ perspective to other policy initiatives as relevant, with a focus on patient empowerment, redressing health inequalities, quality of care and patient safety, information to patients and health literacy, patient involvement in health technology assessment, and nutrition.

    Address

    Head Office
    Chaussée d'Etterbeek 180
    Brussels 1040
    BELGIUM
    EU Office
    Chaussée d'Etterbeek 180
    Brussels 1040
    BELGIUM

    Website

    http://www.eu-patient.eu

  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    100%4

    Lobbyists (Full time equivalent)

    4

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    5 accreditations were / are live (in bold) for the selected state of 16 Mar 2023

    Name Start date End Date
    Yann HEYER 09 Sep 2023 06 Sep 2024
    Estefania CALLEJAS DE LUCA 06 Jan 2024 03 Jan 2025
    Claudia LOUATI 05 May 2023 03 May 2024
    Anca TOMA 06 Sep 2023 05 Sep 2024
    Milana Trucl 06 Sep 2023 05 Sep 2024
    Julie SPONY 06 Sep 2023 05 Sep 2024
    Ms Estefania CALLEJAS DE LUCA 06 Jan 2024 15 Apr 2024
    Mr Yann HEYER 09 Sep 2023 15 Apr 2024
    Mr Anca TOMA 06 Sep 2023 15 Apr 2024
    Ms Milana TRUCL 06 Sep 2023 15 Apr 2024
    Ms Julie SPONY 06 Sep 2023 15 Apr 2024
    Ms Claudia Louati 05 May 2023 15 Apr 2024
    Ms Emma Kaisa Tuulikki IMMONEN 22 Sep 2022 18 Mar 2023
    Mr Juan Jose FERNÁNDEZ ROMERO 07 Sep 2022 13 Aug 2023
    Mr Anca TOMA 07 Sep 2022 06 Sep 2023
    Ms Milana TRUCL 07 Sep 2022 06 Sep 2023
    Ms Julie SPONY 07 Sep 2022 06 Sep 2023
    Ms Katie Gallagher 23 Nov 2019 21 Nov 2020
    Ms Nicola BEDLINGTON 21 Nov 2019 21 Nov 2020
    Mr Usman KHAN 07 Sep 2019 05 Sep 2020
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 29 Aug 2019 29 Aug 2020
    Mr Lyudmil NINOV 29 Aug 2019 29 Aug 2020
    Konstantinos Aligiannis 29 Aug 2019 19 Jan 2020
    Mr Julien RICHARD 08 Feb 2019 29 Aug 2019
    Ms Emily BOWLES 07 Feb 2019 01 Mar 2020
    Ms Katie Gallagher 08 Jan 2019 23 Nov 2019
    Ms Nicola BEDLINGTON 07 Dec 2018 21 Nov 2019
    Ms Valentina STRAMMIELLO 18 May 2018 18 May 2019
    Mr Lyudmil NINOV 17 May 2018 17 May 2019
    Ms Elena Balestra 09 May 2018 09 May 2019
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 08 May 2018 01 Jun 2019
    Konstantinos Aligiannis 08 May 2018 01 Jun 2019
    Ms Katie Gallagher 03 Jan 2018 15 Dec 2018
    Ms Nicola BEDLINGTON 25 Nov 2017 24 Nov 2018
    Ms Camille Bullot 16 Jun 2017 13 Jun 2018
    Ms Elena Balestra 05 May 2017 04 May 2018
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 25 Apr 2017 20 Apr 2018
    Konstantinos Aligiannis 25 Apr 2017 20 Apr 2018
    Mr Laurent Louette 21 Feb 2017 07 Feb 2018
    Ms Katie Gallagher 09 Dec 2016 09 Dec 2017
    Ms Camille Bullot 23 Jun 2016 16 Jun 2017
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 20 Feb 2016 19 Feb 2017
    Mr Laurent Louette 13 Feb 2016 12 Feb 2017
    Ms Laurène Souchet 11 Feb 2016 14 Dec 2016
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 07 Mar 2015 20 Feb 2016
    Ms Cynthia Bonsignore 11 Feb 2015 10 Feb 2016
    Ms Laurène Souchet 11 Feb 2015 05 Feb 2016
    Ms Camille Bullot 01 Oct 2014 29 Sep 2015
    Ms Emma Kaisa Tuulikki Immonen-Charalambous 07 Mar 2014 06 Mar 2015
    Ms Cynthia Bonsignore 19 Feb 2014 12 Feb 2015
    Ms Laurène Souchet 19 Feb 2014 12 Feb 2015

    Complementary Information

    EPF Board members are involved in our work on a voluntary, non-remunerated basis

    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

    •EPF co-leads the EU4Health Civil Society Alliance in collaboration with EPHA (ww.eu4health.eu)

    •EPF participates in the AMR Stakeholder Network, an informal network of EU health organisations interested in the topic of AMR. It has more than 60 organisations. It is coordinated by EPHA. More information is available here https://epha.org/amr-stakeholder-network

    •EPF is a member of Civil Society Europe and SDG Watch Europe.

    •EPF participates in All Policies for Healthy Europe (AP4HE), an informal stakeholders’ group focusing on citizens’ health and well-being. It is currently managed by the consultancy Political Intelligence. More information is available here: https://healthyeurope.eu/

    •EPF participates in the EU Health Coalition, an information stakeholders’ group funded by EFPIA and focusing on key healthcare topics. More information is available here: https://www.euhealthcoalition.eu/

    •EPF is a member of the AMR patient Group, managed by Health First Europe. More information is available here: https://amrpatientgroup.eu/

    •EPF also develops collaborations with various organisations representing different health stakeholders and within various formal and informal networks:

    We have memoranda of understanding with various organisations, such as IAPO (International Alliance of Patients Organizations), ESQH (the European Society for Quality in Healthcare) CPME (the Standing Committee of European Doctors) and ENHA (The European Nutrition for Health Alliance).

    We also have informal relationships with healthcare professionals’ organisations (e.g. Pharmaceutical Group of the European Union (PGEU), European Specialist Nurses Organisations (ESNO), the European Federation of Nurses (EFN), BioMed Alliance, public health organisations (e.g. the European Public Health Alliance (EPHA) and other including Civil Society Europe and European association working for carers (EUROCARERS).

    We have co-chaired regular dialogues between patient organisations and members of MedTech Europe, the medical devices industry association. We signed a Memorandum of Understanding in May 2013 available on our website to set the aims and principles for this dialogue.

    We also participate in the EFPIA Patient Think Tank, a quarterly meeting with the Pharmaceutical industry, which promotes dialogue on EU policy issues in the area of health and innovative medical research. This event is subject to the EFPIA code of conduct.

    EPF has also collaborated with the Bulgarian National Patients’ Organisation (NPO) to set up a network of organisations at EU level to advocate for more actions on access to healthcare, the Patient Access Partnership (PACT). Partners include patient organisations, healthcare professionals organisations, academia, healthcare industries.

    EPF has received accreditation in 2019 as an accredited Non-State Actor with the WHO Regional Office for Europe, and regularly participates in activities involving NGO stakeholders.

    Information on our cooperation with other bodies and organisations is available here: https://www.eu-patient.eu/about-epf/about-us/Cooperation/

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2021 - Dec 2021

    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

    2,032,899€

    Major funding types in closed year

    Member's contribution, Grants, Other

    Major contributions in closed year

    TypeNameAmount
    Contribution European Commission 780,689€

    Other financial info

    Our financial information is published yearly in our annual report, and on EPF website in this section: http://www.eu-patient.eu/About-EPF/Transparency/Balance-Sheet-Accounts/

  • EU Structures

    Groups (European Commission)

    eHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=2769 #Member #C#Civil society, Other#Medical Device Coordination Group#X03565#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3565 #Observer #C#Civil society

    Groups (European Parliament)

    N/A

    Communication activities

    Our recent relevant position papers include (published in 2022):
    •EPF joint position paper with the EU4Health Civil Society Alliance for a more meaningful and systematic engagement of health civil society organisations in EU policymaking processes. December 2022.
    •EPF joint statement with Civil Society Europe on the European Commission's consultation for a legislative initiative on cross-border activities of associations. December 2022.
    •EPF’s call for action on Medical Devices Regulation. December 2022.
    •EPF statement on the European Health Data Space. November 2022.
    •EPF statement on AMR Council Recommendation. November 2022.
    •EPF joint statement with 35 stakeholders on the European Health Data Space. October 2022.
    •EPF joint statement on operating grants for health NGOs. September 2022.
    •EPF’s response to the European Commission’s feedback consultation on the European Health Data Space. July 2022.
    •EPF joint statement with 19 other health, animal welfare and environmental organisations on the draft list of antimicrobials to be reserved for human health proposed by the European Commission. May 2022.
    •EPF statement on the new European Commission’s proposal for a European Health Data Regulation. May 2022
    •EPF statement on Ukraine. February 2022.

    All our positions, statements and briefings are published on our website at: http://www.eu-patient.eu/library/position-papers--briefings/

    Recent events:
    •10/11/2022 – EPF webinar “EU legislation on AI”
    •15-16/10/2022 – COMPAR-EU Final Conference Advocacy Event.
    •14-17/07/2022 – Summer Training Course for Young Patient Advocates (STYPA)
    •23/04/2022 – EPF Annual General Meeting.
    •09/02/2022 – EPF webinar “The Evaluation of the EU’s Blood, Tissues and Cells Directives – what is at stake for the patient community”
    •13/01/2022 – EPF joint webinar with the Optimal Nutritional Care for All (ONCA) on patient involvement in nutritional care.

    A list of past events can be found here: https://www.eu-patient.eu/Events/Archived-Events/

    Furthermore, information on our several EU projects can be found here: https://www.eu-patient.eu/Projects/ongoing-projects/

    Other activities

    • European Commission: EPF is a member of the European Health Policy Platform. EPF also participates in the European Innovation Partnership on Active and Healthy Ageing.
    • EU Agencies: EPF is a co-chair of the The European Medicines Agency’s (EMA) Patients’ and Consumers’ Working Party (PCWP) of the European Medicines Agency (EMA), has a representative in the EMA's Pharmacovigilance Risk Assessment Committee (PRAC) and is a member of the Fundamental Rights Platform of the EU Fundamental Rights Agency (FRA).
    • European Parliament: We participate to the MEP Access to Healthcare Interest Group meetings (launched in January 2015)
    • EPF works closely together with the European Centre for Disease Prevention and Control (ECDC) in the field of AMR

  • Meetings

    Meetings

    25 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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