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 2020 - Dec 2020
Lobbyists (Full time equivalent)
3.5 Fte (4)
Lobbyists with EP accreditation
0
High-level Commission meetings
27
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 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 EuropeMain 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 2022 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. Our work plan includes policy and advocacy, project, and capacity-building activities. 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 2022, EPF will mainly focus on: surveying the impact of COVID-19 on patients; access to healthcare (e.g. the review of the cross-border healthcare directive); the EU Pharmaceutical Strategy and review of the EU pharmaceutical legislation; EU legislation on medical devices (MDR/IVDR); monitoring the European Health Union Package; the EU4Health Programme and patient involvement in EU health-related research projects; digital health (e.g. European Health Data Space, artificial intelligence). EPF will also contribute a patients’ perspective to other policy initiatives as relevant, with a focus on patient empowerment, redressing health inequalities, quality of care and patient safety, information to patients and health literacy, patient involvement in health technology assessment, and nutrition.Address
Head Office
Chaussée d'Etterbeek 180
Brussels 1040
BELGIUMEU Office
Chaussée d'Etterbeek 180
Brussels 1040
BELGIUMWebsite
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People
Total lobbyists declared
4
Employment time Lobbyists 100% 3 50% 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 13 May 2022
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
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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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 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 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) and other including Civil Society Europe and European association working for carers (EUROCARERS).
We have co-chaired regular dialogues 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.
EPF has received accreditation in 2019 as an accredited Non-State Actor with the WHO Regional Office for Europe, and regularly participates in activities involving NGO stakeholders.
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/events/old/2014/2014_cbhc_gr/presentations/day2/2021_list_members.pdf
EPF membership consists of 77 members: 58 Full members, 18 Associate members, and 1 provisional member. Out of 77 members, 52 pan-European umbrellas and 25 organisations are active at national levels, representing 19 countries. -
Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2020 - Dec 2020
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
2,213,893€
Major funding types in closed year
Other, Member's contribution, Grants
Major contributions in closed year
Type Name Amount Contribution European Commission 707,179€ Grant European Commission 707,179€ 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)
European workforce for health expert group#E03257#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?groupID=3257 #Member #C#Civil society#Medical Device Coordination Group#X03565#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?groupID=3565 #Observer #C#Civil society#03 - Clinical Investigation and Evaluation (CIE)#04 - Post-Market Surveillance and Vigilance (PMSV)#eHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?groupID=2769 #Member #C#Civil society, Other
Groups (European Parliament)
N/A
Communication activities
Our recent relevant position papers include (published in 2021):
•EPF’s response to the European Commission’s public consultation on the revision of the EU pharmaceuticals legislation. December 2021.
•EPF joint statement, with other 19 EU health organisations. “Position paper on the Pharmaceutical Strategy for Europe”. November 2021
•EPF joint statement with the Health Outcomes Observatory. “Joint statement on Health Systems after COVID-19 report”. 2021
•EPF joint statement with EPHA. “HERA should serve patients and promote public health. A shared vision for the EU’s new Authority”. September 2021.
•EPF statement. “Why the vaccination of healthcare professionals is important to patients”. July 2021
•EPF’s response to the European Commission’s public consultation and accompanying statement. “Shaping a European Health Data Space with and for patients”. 2021.
•EPF joint open letter, with other 24 organisations. “The EU4Health 2021 work programme – a missed opportunity to support European Health NGOs to play their key role in the COVID-19 pandemic and beyond”.
•EPF’s response and accompanying statement to the European Commission’s public consultation on “Cross-border Healthcare – evaluation of patients’ rights”. February 2021
•EPF statement. “Making sure that Europe’s Beating Cancer Plan works for patients”. February 2021.
•EPF’s response and accompanying statement to the European Commission’s public consultation on “Data sharing in the EU – common European data spaces (new rules)”. 2021
•EPF’s response and accompanying statement to the European Commission’s public consultation on” Digital health data and services – the European health data space”. 2021
•EPF’s response and accompanying statement to the European Commission’s public consultation on “European Medicines Agency – strengthened role to address public health emergencies”. January 2021
•EPF’s response and accompanying statement to the European Commission’s public consultation on “European Centre for Disease Prevention and Control – reinforced mandate”. 2021
All our positions, statements and briefings are published on our website at: http://www.eu-patient.eu/library/position-papers--briefings/
Recent events:
•09/02/2022 – EPF webinar “The Evaluation of the EU’s Blood, Tissues and Cells Directives – what is at stake for the patient community”
•13/01/2022 – EPF joint webinar with the Optimal Nutritional Care for All (ONCA) on patient involvement in nutritional care.
•13/12/2021 – Capacity-building webinar “AI Ethics and Implications”.
•26-29/10/2021 – EPF Congress on digital transformation of healthcare.
•29/09/2021 – Virtual workshop on the draft Guiding Principles for the prior authorisation of cross-border healthcare.
•27/09/2021 – EPF webinar, in partnership with the Patient Access Partnership (PACT) on model access solutions initiative.
•08/07/2021 – Capacity-building webinar “AI in healthcare: From Science Fiction to Reality”
•23/03/2021 – Joint webinar with the European Commission “Evaluating the Cross-Border Healthcare Directive”
•14/01/2021 – EPF launch webinar “Let’s Talk about Vaccination”
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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Date 06 Mar 2023 Location Brussels Subject Meeting to discuss the reform of EU pharmaceutical legislation Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Stella Kyriakides (Commissioner)
- Karolina Herbout-Borczak (Cabinet member)
Other Lobbyists -
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 21 Sep 2022 Location Brussels Subject Rare diseases Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Ines Prainsack (Cabinet member)
- Stella Kyriakides (Commissioner)
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 - Phamaceutical Group of the European Union
- Medichem, S.A.
- European Healthcare Distribution Association
- Bureau Européen des Unions de Consommateurs
- MEDICINES FOR EUROPE
- Pfizer Inc.
- Leuphana Universität Lüneburg
- Teva Pharmaceuticals Europe BV
- The European Association of Hospital Pharmacists
- Fresenius Kabi Deutschland GmbH
- European Chemical Industry Council
- European Federation of Pharmaceutical Industries and Associations
- Novo Nordisk A/S
- 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 - Anouk Faber (Cabinet member)
- Nicolas Schmit (Commissioner)
- Christoph Nerlich (Cabinet member)
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 - Eszter Batta (Cabinet member)
- Agnieszka Skonieczna (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 - 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
- MEDICINES FOR EUROPE
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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)
- Tove Ernst (Cabinet member)
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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 - Inga Preikšienė (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
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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 - Annika Nowak (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
Other Lobbyists - Bureau Européen des Unions de Consommateurs
- Stichting Health Action International
- European Federation of Allergy and Airways Diseases Patients' Associations
- EUROPEAN ORGANISATION FOR RARE DISEASES
- International Diabetes Federation European Region
- ASDM Consulting
- European Public Health Alliance
- European Cancer Patient Coalition
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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