European Patients' Forum (EPF)

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Registration as it was on 26 Mar 2021
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Overview

Lobbying Costs

750,000€

Financial year: Jan 2020 - Dec 2020

Lobbyists (Full time equivalent)

3.5 Fte (5)

Lobbyists with EP accreditation

0

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 that have a direct impact on patients’ lives.( n)( n)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 2021, EPF will focus on: COVID-19 impact on patients; Access to Healthcare, Revision of the Directive 2011/24/EU on patients' rights in cross-border healthcare; Pharmaceutical Strategy (COM(2020) 761 final) and Access to medicine; Blood Tissues and Cell legislation (Directive 2002/98/EC and Directive 2004/23/EC); Medical Devices and in-vitro Diagnostic (MDR Regulation (EU) 2017/745 /IVDR Regulation (EU) 2017/746 ) and their application, European Health Union Package (e.g. ECDC and EMA mandate revision, HERA agency); EU4Health Programme and health research; Digital Health (e.g. European Health Data Space, Artificial Intelligence), Health Technology Assessment.

    EPF will also contribute a patients’ perspective to policy initiatives on patient empowerment, health inequalities/access to healthcare, quality of care, patient safety, information to patients, health literacy, health technology assessment, personalised medicines and non-discrimination in employment and education, nutrition, and Social Rights.

    Address

    Head Office
    Chaussée d'Etterbeek 180
    Brussels 1040
    BELGIUM
  • People

    Total lobbyists declared

    5

    Employment timeLobbyists
    100%2
    75%1
    50%1
    25%1

    Lobbyists (Full time equivalent)

    3.5

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    0 accreditations were / are live (in bold) for the selected state of 26 Mar 2021

    Name Start date End Date
    Ms Estefania CALLEJAS DE LUCA 06 Jan 2024 03 Jan 2025
    Mr Yann HEYER 09 Sep 2023 06 Sep 2024
    Mr Anca TOMA 06 Sep 2023 05 Sep 2024
    Ms Milana TRUCL 06 Sep 2023 05 Sep 2024
    Ms Julie SPONY 06 Sep 2023 05 Sep 2024
    Ms Claudia Louati 05 May 2023 03 May 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

    The EPF efforts are based on EPF membership consultations, plus voluntary board and direct membership input

    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

    III - Non-governmental organisations

    Subcategory

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    -EPF co-leads the EU4Health Civil Society Alliance in collaboration with EPHA (www.eu4health.eu)
    -EPF is a member of Civil Society Europe and SDG Watch Europe.
    -EPF also develops close 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), 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 co-chair twice yearly a dialogue 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

    Information on our cooperation with other bodies and organisations is available here: http://www.eu-patient.eu/whatwedo/Cooperation/

    EPF is also works together with international organisations like the Organisation for Economic Co-operation and Development (OECD) and the World Health Organisation (WHO)

    Member organisations

    None declared

  • Financial Data

    Closed financial year

    Jan 2020 - Dec 2020

    Lobbying costs for closed financial year

    750,000€

    EU grant income for closed financial year

    707,179 € (Source: European Commission)

    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#http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=2769 #Member #C#Civil society, Other#Medical Device Coordination Group#X03565#http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=3565 #Observer #C#Civil society#04 - Post-Market Surveillance and Vigilance (PMSV)#03 - Clinical Investigation and Evaluation (CIE)#European workforce for health expert group#E03257#http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=3257 #Member #C#Civil society

    Groups (European Parliament)

    N/A

    Communication activities

    Our recent relevant position papers include (published in 2019-2020):

    •EPF’s Response and Accompanying statement “Public consultation on the White Paper on Artificial Intelligence”. 2020.
    •EPF Statement. “Shaping a European Health Union that delivers a new deal for patients and civil society”. 2020.
    •EPF Recommendations for EU4Health Programme Plenary Vote. 2020.
    •EPF’s Response and Accompanying statement “Public Consultation on the European Strategy on Data”. 2020.
    •EPF Statement “COVID-19 and Brexit – Protecting Patients Across Europe from Pandemics”. 2020.
    •EPF Statement “EPF proposes a progressive and patient-centred EU4HEALTH programm”. 2020.
    •EPF Statement in Response to the Written Consultation on the WHO European Programme of Work. 2020.
    •EPF’s Response to the European Commission’s Public consultation on the EU Pharmaceutical Strategy. 2020.
    •EPF Letter on EU4Health to Permanent Representations of the EU. 2020.
    •EPF’s Response to the EU’s Beating Cancer Plan Public Consultation. 2020.
    •EPF Statement “High time for enhanced European coordination and competence on health”. 2020.
    •EPF Position Paper “The Value and Pricing of Innovative Medicines”. 2020.
    •EPF Infografic “Clinical Nutrition Guidelines – How to prevent and manage chronic conditions”. 2019.
    EPF Elections Manifesto 2019. “Putting what matters to patients at the heart of EU Health Policy”. 2019.
    EPF position paper on clinical nutrition guidelines and summaries for patients
    Collection of initiatives for better inclusion of people with chronic diseases in the workplace
    EPF position statement on Health Technology Assessment
    EPF position paper on information to patients on food and nutrition
    EPF Collection of good practices for cooperation with NGOs representing underserved groups, February 2018
    EPF Set of tools to promote inclusion of patients in the workplace, February 2018
    EPF Position statement on information to patient on food and nutrition, February 2018
    EPF Transparency Guidance, February 2018
    EPF Briefing on Health Technology Assessment in the European Union, February 2018
    EPF Toolkit for Patient Organisations on Patient Empowerment, December 2017
    EPF Position Paper on Quality of Care, December 2017
    Proposal Regarding the Development of Key Competencies for Patients, Families and Carers in Patient Safety, December 2017
    EPF Roadmap towards achieving UHC by 2030, December 2017
    EPF Report on the added-value of patient organisations, November 2017
    EPF Statement on the 2017 Country-Specific Recommendations on Health and Long-term Care and the European Semester Process, October 2017

    All our positions, statements and briefings are published on our website www.eu-patient.eu

    Recent events :
    -01/07/2020 - Launch event position paper ‘The Value and Pricing of Innovative Medicines
    - 2020 (Several events)– Capacity building webinars on Digital Health
    -04/03/2020 Re-Launch of MEP Interest Group on Access to Healthcare "The State of Health in the EU – persistent gaps in access: where do we go from here?”
    -25/10/2019 EPF and Medicines for Europe Dialogue
    -12-14/10/2019 EPF Congress 2019
    -09/2019 (several days) EPF Capacity building module on Empowering Leadership and Positive Governance
    - 02/02/18 Incentives Workshop
    - 24-25/05/18 MedTech Workshops
    - 25-27/05/18 Capacity Building meeting Bratislava
    - 01-04/06/18 Summer Training for Young Patient Advocates
    - 6-7/10/18 Capacity Building Warsaw
    - 08/10/2018 EPF-Medicines for Europe Dialogue
    - 20-21/10/2018 Patient Advocacy Seminar
    - EPF Campaign 2017 on Universal Health Coverage: http://www.eu-patient.eu/campaign/access-to-healthcare/

    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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