European Patients' Forum (EPF)

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Registration as it was on 26 Mar 2020
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Overview

Lobbying Costs

766,777€

Financial year: Jan 2019 - Dec 2019

Lobbyists (Full time equivalent)

3.5 Fte (5)

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 for all patients with chronic conditions in Europe have equal access to high quality, patient-centred health and related care.

    Our mission is to be the collective, influential patient voice in European health and related policies and a driving force to advance patient empowerment and patient access in Europe.

    EPF helps to empower patients’ organisations through educational seminars, policy initiatives and projects. We coordinate best practice exchanges between patient organisations at European and national levels. Our programmes also help to strengthen their organisational and advocacy capacity.

    EPF's goals as stated in the Strategic Plan 2014-2020 are as follows:

    Goal 1: HEALTH LITERACY
    To promote access for patients and their informal carers to information and education that enables them to make informed choices about their health.

    Goal 2: HEALTHCARE ACCESS AND QUALITY
    To contribute to improvements in health systems that enable equitable access to sustainable and high-quality healthcare designed and delivered to meet patients’ and informal carers’ needs at all levels of care, embracing innovation in all its forms.

    Goal 3: PATIENTS’ INVOLVEMENT
    To advance meaningful patient involvement in the development and implementation of health-related policies, programmes and projects in the EU.

    Goal 4: PATIENTS' EMPOWERMENT
    To promote the development and implementation of policies, strategies and healthcare services that empower patients to be involved in the decision-making and management of their condition according to their preference, whilst raising awareness about their rights and responsibilities.

    Goal 5: SUSTAINABLE PATIENTS' ORGANISATIONS
    To support the development, growth and capacity building of inclusive, effective, sustainable and representative patients’ organisations, and to foster cooperation and synergies between them.

    Goal 6: NON DISCRIMINATION
    To promote the development of EU and national policies that tackle discrimination faced by patients in health and social care as well as in domains like education and employment.

    Our vision, core values, and strategic goals stated in our strategic plan inform EPF’s policy and programme work, external communications and collaboration and partnerships with health stakeholders. They are embedded in all activities we undertake and constitute EPF’s identity card. We outline our yearly objectives through an annual work plan.

    Link to EPF Strategic Plan: http://www.eu-patient.eu/library/Strategic-Plan/

    Link to EPF Annual Work plans: http://www.eu-patient.eu/library/Other-Material/

    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 2020 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.

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

    EPF has been inolved in the implementation of the regulation on medical devices (2012/0266(COD)). We advocate for safer medical devices, better transparency and information to patients, and meaningful patient involvement in the development process for medical devices.

    EPF has also followed developments on the General Data Protection Regulation (COM(2012)0011) and the discussions following its adoption.

    In 2015 we have been monitoring closely the implementation of the Directive 2011/24/EC on patients’ rights in cross border healthcare, a topic that we are still actively following and engaging with.

    We are also monitoring the regulation No 536/2014 on Clinical Trials on medicinal products for human use. In 2015 we have published a position on clinical trials result and communication of the lay summary.

    Currently, we are also closely following the developments around the proposal for a Regulation of the European Parliament and the Council on health technology assessment and amending Directive 2011/24/EU.

    At the same time, we have been involved in the legislative files of the MFF (ESF+, Horizon Europe, etc) as well as in the different initiatives in the fild of digital health.

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

    Address

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

    Total lobbyists declared

    5

    Employment timeLobbyists
    100%3
    25%2

    Lobbyists (Full time equivalent)

    3.5

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    5 accreditations were / are live (in bold) for the selected state of 26 Mar 2020

    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

    plus voluntary board and 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

    (i) EPF is a member of Civil Society Europe and SDG Watch Europe.
    (ii) 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), 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

    The full list of our members is also available at this link: http://www.eu-patient.eu/Members/The-EPF-Members/

    EPF membership consists of 74 members: 54 Full members, 19 Associate members, and 1 provisional members.
    EPF consists of 47 pan-European umbrellas and 25 organisations active at national levels, representing 20 countries.

  • Financial Data

    Closed financial year

    Jan 2019 - Dec 2019

    Lobbying costs for closed financial year

    766,777€

    EU grant income for closed financial year

    1,172,461 € (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)

    Medical Device Coordination Group#X03565 #http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=3565 #Observer #C#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#Expert group on follow-up activities related to Corporate Responsibility in the field of Pharmaceuticals #E02558 #http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=2558 #Member #C#eHealth Stakeholder Group#E02769 #http://ec.europa.eu/transparency/regexpert/index.cfm?do=groupDetail.groupDetail&groupID=2769 #Member #C

    Groups (European Parliament)

    None

    Communication activities

    To be published in 2020: EPF’s revised position on the Value and Pricing of Innovative Medicines
    Our recent relevant position papers include (published in 2016-2018):
    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 at: http://www.eu-patient.eu/library/position-papers--briefings/

    Recent events:

    EPF Campaign 2017 on Universal Health Coverage: http://www.eu-patient.eu/campaign/access-to-healthcare/

    - 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

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

    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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