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
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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 time Lobbyists 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
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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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/
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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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Date 06 Mar 2023 Location Brussels Subject Pharma Strategy Cabinet Cabinet of Vice-President Margaritis Schinas Portfolio Promoting the European Way of Life Attending - Maria Luisa Llano Cardenal (Cabinet member)
- Margaritis Schinas (Vice-President)
Other Lobbyists -
Date 25 May 2022 Location Bruxelles - Virtual Subject VTC meeting - European Health Data Space – EPF Congress 2022 Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Ralf Kuhne (Cabinet member)
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Date 25 Nov 2021 Location Webex Subject Follow up to Cssr Kyriakides’ meeting with CSOs on 25/10/2021 on civil society funding through EU4Health Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Giorgios Rossides (Cabinet member)
Other Lobbyists -
Date 25 Oct 2021 Location Brussels Subject VTC Meeting: EU4Health Work Programme 2022 and operating grants. Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
Other Lobbyists -
Date 30 Jul 2021 Location Virtual meeting Subject Meeting with civil society representatives regarding the EU4health programme. Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
Other Lobbyists -
Date 16 Jun 2021 Location online Subject Supply chains for medicines Cabinet Cabinet of Vice-President Margaritis Schinas Portfolio Promoting the European Way of Life Attending - Maria Luisa Llano Cardenal (Cabinet member)
- Margaritis Schinas (Vice-President)
Other Lobbyists - Novo Nordisk A/S
- Fresenius Kabi Deutschland GmbH
- MEDICINES FOR EUROPE
- European Chemical Industry Council
- Leuphana Universität Lüneburg
- European Federation of Pharmaceutical Industries and Associations
- The European Association of Hospital Pharmacists
- Bureau Européen des Unions de Consommateurs
- Pfizer Inc.
- Phamaceutical Group of the European Union
- Medichem, S.A.
- Teva Pharmaceuticals Europe BV
- European Healthcare Distribution Association
- SANOFI
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Date 16 Feb 2021 Location Videoconference Subject Pact for Skills roundtable with the representatives of the health sector. Cabinet Cabinet of Commissioner Nicolas Schmit Portfolio Jobs and Social Rights Attending - Christoph Nerlich (Cabinet member)
- Anouk Faber (Cabinet member)
- Nicolas Schmit (Commissioner)
Other Lobbyists -
Date 16 Feb 2021 Location Videoconference Subject Pact for Skills roundtable with the representatives of the health sector Cabinet Cabinet of Commissioner Thierry Breton Portfolio Internal Market Attending - Agnieszka Skonieczna (Cabinet member)
- Eszter Batta (Cabinet member)
- Thierry Breton (Commissioner)
Other Lobbyists -
Date 26 Jun 2020 Location Brussels Subject VC meeting: Exchange of views on the forthcoming Pharmaceutical Strategy Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
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Date 29 May 2020 Location Brussels Subject Video call with Pharmaceutical Industrial Associations, the European Medicines Agency and the European Centre for Disease Prevention and Control, to discuss Possible shortages of medicines and medical devices for the Covid-19 outbreak Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
Other Lobbyists - MEDICINES FOR EUROPE
- Vaccines Europe
- European Confederation of Pharmaceutical Entrepreneurs
- European Federation of Pharmaceutical Industries and Associations
- European Public Health Alliance
- MedTech Europe
- European Coordination Committee of the Radiological, Electromedical and healthcare IT Industry
- Association of the European Self-Care Industry
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Date 07 May 2020 Location Brussels Subject VC meeting on EU's Cancer Plan and challenges of patients with chronic diseases during COVID-19 Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
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Date 07 Jan 2020 Location Brussels Subject Discussion on cancer Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
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Date 13 Nov 2019 Location Brussels Subject Patient involvement as a path towards more effective health systems Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Alina Timofte (Cabinet member)
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Date 12 Nov 2019 Location Brussels Subject participation in high level forum DG Health and Food Safety Attending - Anne Bucher (Director-General)
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Date 11 Nov 2019 Location Brussels Subject To give a speech at the give to contribute to the opening Plenary Session of EPF Congress “Advancing Meaningful Patient Involvement – A path to effective health systems”. DG Health and Food Safety Attending - Anne Bucher (Director-General)
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Date 09 Oct 2019 Location Brussels Subject Discussion on the future of the EPF cooperation with the Commission Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Inga Preikšienė (Cabinet member)
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Date 28 Mar 2019 Location Brussels Subject discussion on EMA’s strong commitment to patient engagement DG Health and Food Safety Attending - Anne Bucher (Director-General)
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Date 23 May 2018 Location brussels Subject Discussion about collaboration with Sante DG Health and Food Safety Attending - Xavier Prats Monné (Director-General)
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Date 15 May 2018 Location Brussels Subject HTA Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Annika Nowak (Cabinet member)
Other Lobbyists - European Public Health Alliance
- European Cancer Patient Coalition
- ASDM Consulting
- Stichting Health Action International
- EUROPEAN ORGANISATION FOR RARE DISEASES
- European Federation of Allergy and Airways Diseases Patients' Associations
- International Diabetes Federation European Region
- Bureau Européen des Unions de Consommateurs
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Date 17 Jan 2018 Location Brussels Subject Discussion on the future cooperation with DG SANTE DG Health and Food Safety Attending - Xavier Prats Monné (Director-General)
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Date 12 May 2017 Location Brussels Subject Sustainable Development Goals, EPF ‘s campaign on this issue and the Social Pillar Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Paula Duarte Gaspar (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
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Date 27 Sep 2016 Location Brussels Subject To discuss different issues: public health programme, chronic diseases DG Health and Food Safety Attending - Xavier Prats Monné (Director-General)
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Date 25 Apr 2016 Location Brussels Subject Cooperation in the area of acute care Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Annika Nowak (Cabinet member)
Other Lobbyists -
Date 28 Jan 2015 Location Brussels Subject Health system performance assesment Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Annika Nowak (Cabinet member)
- Meetings