European Patients' Forum (EPF)

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Registration as it was on 18 Mar 2024
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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)

6 Fte (6)

Lobbyists with EP accreditation

6

High-level Commission meetings

27

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 2024 Work Plan focuses on Patient Involvement throughout our activities, including as part of our work on patient safety, patient equity, data & digital health and community. The activities under these four themes encompass the work of four mutually reinforcing areas; policy & advocacy, capacity building, projects and communications. 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 2024, EPF will focus on: our campaign for the 2024 European Parliament elections focused on meaningful involvement of patient organisations in health policy; digital health (e.g. European Health Data Space, artificial intelligence); the ongoing revision of EU pharmaceutical legislation, including regulatory processes and unmet medical needs; antimicrobial resistance; implementation of EU legislation on medical devices (MDR/IVDR); the EU4Health programme and patient involvement in EU health-related research projects. EPF will also contribute a patient perspective to other policy initiatives where relevant, focusing on patient empowerment, reducing health inequalities, quality of care and patient safety, patient information and health literacy, and patient involvement in health technology assessment.

    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

    6

    Employment timeLobbyists
    100%6

    Lobbyists (Full time equivalent)

    6

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    6 accreditations were / are live (in bold) for the selected state of 28 Apr 2024

    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 is a member of the AMR Multistakeholder Partnership Platform. More information is available here: https://www.fao.org/3/cc3001en/cc3001en.pdf

    •EPF is a member of the EU-JAMRAI 2 Stakeholder Forum. More information is available here: https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/projects-details/43332642/101127787/undefined?programmePeriod=2021-2027&freeKeywords=jamrai&order=DESC&page=1&pageSize=10

    •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 other 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), the European Centre for Disease Prevention and Control (ECDC), and other including Civil Society Europe and European association working for carers (EUROCARERS).

    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 also works together with international organisations like the Organisation for Economic Co-operation and Development (OECD) and the World Health Organization Regional Office for Europe (WHO)

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

    Member organisations

    The full list of our members is also available at this link: https://www.eu-patient.eu/globalassets/membership/list-of-epf-members-2.pdf

    EPF membership consists of 79 members: 60 Full members, 18 Associate members, and 1 provisional member. Out of 79 members, 53 pan-European umbrellas and 26 organisations are active at national levels, representing 21 countries.

  • 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

    2,370,907€

    Major funding types in closed year

    Grants, Member's contribution, Other

    Funding types "other" information

    Grants (including EU grants) - EU project grants: €701,899.48 - Unrestricted grants from sponsors: €1,630,740.77 (percentage of the highest contribution from a single donor is 4.22%) Member’s contributions - Membership fees: €23,300.00 Other: Interest and other income -€14,966.75

    Major contributions in closed year

    TypeNameAmount
    Contribution European Commission 701,899€
    Grant CoreMD 6,904€
    Grant ComparEU 191,885€
    Grant EATRIS + 23,638€
    Grant EHDEN 28,185€
    Grant EU-PEARL 127,425€
    Grant Gravitate Health 51,116€
    Grant H2O 68,515€
    Grant HTA 11,455€
    Grant IMMUCAN 18,718€
    Grant IMMUNIVERSE 946€
    Grant LABEL TO ENABLE 19,900€
    Grant Pharmaledger 79,505€
    Grant PERISCOPE 30,353€
    Grant PERMIT 31,785€
    Grant PREFER 6,051€
    Grant PROPHET 5,511€

    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#04 - Post-Market Surveillance and Vigilance (PMSV)#03 - Clinical Investigation and Evaluation (CIE)#Antimicrobial Resistance One Health Network#E03853#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3853 #Member #C#Civil society

    Groups (European Parliament)

    N/A

    Communication activities

    Our recent relevant position papers include (published in 2023):
    •EPF's reaction to the European Parliament’s adoption of the European Health Data Space report; December 2023.
    •EPF’s Statement for the European Antibiotic Awareness Day. November 2023.
    •EPF response to the European Commission’s call for feedback on the revision of the EU Pharmaceutical Legislation. November 2023.
    •EPF’s position on establishing an opt-out system for the secondary use of health data. October 2023.
    •EPF's paper on AI in Healthcare: Advancing Patient-Centric Care through Co-design and Responsible Implementation. October 2023.
    •EPF's call on a patient-centred vision for Unmet medical needs. October 2023.
    •EPF's reaction to the draft reports on the revision of EU pharmaceutical legislation. October 2023.
    •EPF's call on ensuring access to paediatric medicines. October 2023.
    •EPF's recommendations for a patient-centred revision of the EU pharmaceutical legislation. July 2023.
    •EPF position statement EU4Health priorities. June 2023.
    •EPF's statement on stepping up the involvement of the patient community in the fight against AMR. May 2023.
    •EPF's reaction to pharmaceutical legislation revision. April 2023.
    •EPF's reaction to the proposed amendments of the Medical Devices Regulation. January 2023.

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

    Recent events:
    •11/12/2023 – EPF simulation workshop on the EU HTA Regulation
    •13-16/07/2023 – Summer Training Course for Young Patient Advocates (STYPA)
    •31/05/2023 – EPF member-only webinar on the revision of EU Pharmaceutical Legislation
    •28/04/2023 – EPF's 20th Anniversary event
    •29/04/2023 – EPF's Annual General Meeting


    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

    27 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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