European Patients' Forum (EPF)

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Registration as it was on 18 Apr 2017
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Overview

Lobbying Costs

743,849€

Financial year: Jan 2016 - Dec 2016

Lobbyists (Full time equivalent)

4.75 Fte (9)

Lobbyists with EP accreditation

3

High-level Commission meetings

25

Lobbying Costs over the years

  • Info

    European Patients’ Forum   (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 that all patients with chronic and/ or lifelong conditions in the EU have access to high quality, patient-centred equitable health and social care.

    Our mission is to ensure that the patients’ community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU.

    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

    EPF is mainly active in the fields of health and research in relation with the Third Health Programme (Regulation (EU) No 282/2014).

    Our 2017 work programme builds on the achievements of our 2015 and 2016 programme by addressing the continuum of care with focus on patient-centred chronic disease management, patient empowerment, and equitable access to high quality health and social care.

    EPF is committed to contributing to the programme’s 4 overarching objectives:
    To promote health, prevent diseases, foster supportive environments for health lifestyles
    To Protect Union citizens from serious CBHC threats, responding to health emergencies
    To support public health capacity-building and contribute to innovative, efficient and sustainable health systems (addressing shortages of resources, both human & financial, facilitating the uptake of innovations in health).
    To facilitate access to better and safer healthcare for Union citizens: access to medical expertise, information

    EPF’s 2017 work programme is structured around the three thematic priorities of patient empowerment, access, and sustainable patient organisations (contributing to operational objectives 1, 2, and 3 respectively), which are complemented by cross-cutting activities on dissemination, management and evaluation of the work programme.

    EPF has monitored the proposal for a 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).

    In 2015 we have been monitoring closely the implementation of the Directive 2011/24/EC on patients’ rights in cross border healthcare.

    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.

    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
    Rue Dicks 10
    Luxembourg L-14171
    LUXEMBOURG
    EU Office
    Rue du Commerce 31
    Brussels 1000
    BELGIUM
  • People

    Total lobbyists declared

    9

    Employment timeLobbyists
    75%4
    50%2
    25%3

    Lobbyists (Full time equivalent)

    4.75

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    3 accreditations were / are live (in bold) for the selected state of 18 Apr 2017

    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

    One out of the 3 25%FTE puts together the voluntary contribution of EPF board members

    Person in charge of EU relations

    Ms Nicola Bedlington (Secretary General)

    Person with legal responsibility

    Mr Marco Greco (President)

  • Categories

    Category

    III - Non-governmental organisations

    Subcategory

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    (i) EPF has a policy of not becoming a member of another association, federation or confederation.
    (ii) EPF does however develop 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/

    Member organisations

    None declared

  • Financial Data

    Closed financial year

    Jan 2016 - Dec 2016

    Lobbying costs for closed financial year

    743,849€

    EU grant income for closed financial year

    900,000,000 € (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)

    None

    ACC

    Expert Groups: Member of the eHealth Stakeholder Group (active), Working Group on Health Workforce (active), Working Group on Patient Safety and Quality of Care (no longer active), Impacts, challenges and limitations of EU-funded public health research - Priorities for future research (no longer active)

    Groups (European Parliament)

    None

    Communication activities

    Our recent relevant position papers include (published in 2015-2016):

    EPF Briefing for patients on Medical Devices: Patient safety in the new Regulation, December 2016
    EPF Briefing on the new Medical Devices Regulation: information to patients and transparency, December 2016
    EPF Briefing on in vitro diagnostic medical devices for patients’ organisation, December 2016
    EPF Position Paper on eHealth, December 2016
    EPF Guide on Data Protection, October 2016
    EPF Position Paper on Clinical Trials Lay Summary Results, August 2016
    EPF Statement on the Pricing and Reimbursment of Innovative Medicines, June 2016
    EPF Briefing Paper on Patient Safety, May 2016
    EPF Position Paper on Informed Consent, May 2016
    EPF Statement on the Implementation of the Cross-Border Healthcare Directive, April 2016
    EPF Briefing on the UK Referendum, April 2016
    EPF Position Paper Defining and Measuring Access, March 2016
    EPF Statement on Equal treatment in education and employment, January 2016
    • Medical Devices: http://www.eu-patient.eu/globalassets/policy/medicaldevices/2015-11-24-epf-recommendations-to-the-trilogue-on-medical-devices.pdf

    All our 2016 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/

    EPF campaign on patient empowerment in 2015 - 2016: http://www.eu-patient.eu/campaign/PatientsprescribE/

    • 09/11/2016 12:30 - 16:30
    Fit for Work Conference
    Location : Bratislava
    • 19/10/2016 09:30 - 15:30
    Capacity-Building Session on Patient Safety
    Location : Mundo B Rue d’Edinburgh 26, 1050 - Brussels
    • 08/11/2016 10:00 - 09/11/2016 16:00
    EPF Conference on Patient & Family Empowerment for Better Patient Safety
    Location : Brussels
    • 31/05/2016 14:00 - 17:00
    Dialogue with Medicines for Europe
    Location : Brussels (B)
    • 22/06/2016 09:00 - 11:00
    High-level Policy Roundtable - “Making Empowerment a Reality: Patients as Partners”
    Location : European Parliament, Brussels
    • 19/09/2016 09:00 - 21/09/2016 00:00
    EPF Training module on Transparency & Ethics
    Location : Brussels (B)
    • 06/06/2016 09:00 - 07/06/2016 14:00
    2016 EPF Regional Advocacy Seminar: “Getting the patients’ message across to the national and European levels”
    Location : The Hague (NL)
    • 21/03/2016 09:00 - 13:00
    2016 03 21 - Roundtable on transition to Adult care
    Location : NEW VENUE: Penta hotel Chaussée de Charleroi 38 1060 – BRUSSELS Belgium

    • Regional conferences and workshop on Patients’ rights in Cross Border Healthcare: http://www.eu-patient.eu/whatwedo/Policy/Patients-Mobility/
    • Empowered patients are an asset to society conference: http://www.eu-patient.eu/globalassets/campaign-patient-empowerment/pe-conference-report.pdf

    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), and 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)

    See our 2016 annual report for more information: http://www.eu-patient.eu/globalassets/library/annualreports/epf_annual_report_2016.pdf

  • 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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