Overview
Lobbying Costs
None declared
Financial year: Jan 2014 - Dec 2014
Lobbyists (Full time equivalent)
2.75 Fte (5)
Lobbyists with EP accreditation
4
High-level Commission meetings
26
Lobbying Costs over the years
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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). We are committed to contribute to the objectives 3 and 4: 3 “supporting public health capacity building and contributing to innovative, efficient and sustainable health systems” and “facilitating access to better and safer healthcare”.
EPF is monitoring 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.
We have also released an updated position paper on the proposal for a regulation on in vitro medical devices (2012/0267(COD)) in November 2014.
In 2014 and 2015 we have also been active in monitoring the regulation No 536/2014 on Clinical Trials on medicinal products for human use. In 2014 we have published a statement on the EMA policy on transparency of clinical trials and in 2015 on clinical trials result and communication of the lay summary.
EPF is also monitoring closely the own initiative report of the ENVI committee “Safer healthcare in Europe: improving patient safety and fighting antimicrobial resistance (2014/2207(INI))”. EPF sent proposal for amendments to MEPs in April 2015.
EPF is also following developments on General Data Protection Regulation( COM(2012)0011). In 2014 we joined the campaign of the European Data in Health Research Alliance.
We contribute a patients’ perspective to policy initiatives on patient empowerment, health inequalities/access to healthcare , health technology assessment, personalised medicines.Address
Head Office
Rue Dicks 10
Luxembourg L-14171
LUXEMBOURGEU Office
Rue du Commerce 31
Brussels 1000
BELGIUM -
People
Total lobbyists declared
5
Employment time Lobbyists 75% 2 50% 2 25% 1 Lobbyists (Full time equivalent)
2.75
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
4 accreditations were / are live (in bold) for the selected state of 24 Apr 2015
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's Board members are also actively representing the organisation.
Person in charge of EU relations
Ms Nicola Bedlington (Director)
Person with legal responsibility
Mr Anders Olauson (President)
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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 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 Federation of Nurses (EFN) and public health organisations (e.g. the European Public Health Alliance (EPHA)).
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 industriesMember organisations
Age Related Macular Degeneration (AMD) Alliance International(0),
Alzheimer Europe(0),
Association of European Coeliac Societies - AOECS(0),
Collectif inter associatif Sur la Santé - CISS(0),
Council of Representatives of Patients’ organizations of Lithuania(0),
Estonian Chamber of Disabled People(0),
EUROPA DONNA - The European Breast Cancer Coalition(0),
European Alliance of neuro-Muscular Disorders Association - EAMDA(0),
EFA(0),
EUFAMI(0),
European Federation of Associations of Patients with Haemochromatosis(0),
European Federation of Crohn's and Ulcerative Colitis Associations(0),
European Federation of Homeopathic Patients' Associations(0),
European Genetic Alliances Network - EGAN(0),
European Heart and Lung Transplant Federation(0),
European Infertility Alliance(0),
European Kidney Patients' Federation - CEAPIR(0),
European Multiple Sclerosis Platform - EMSP(0),
European Network of (ex)users and survivors of psychiatry - ENUSP(0),
European Parkinson's Disease Association - EPDA(0),
EURORDIS - European Organisation for Rare Diseases(0),
Federation of Polish Patients - FPP(0),
Fertility Europe(0),
Foro Español de Pacientes(0),
GAMIAN Europe - Global Alliance of Mental Illness Advocacy Networks(0),
International Diabetes Federation - Region Europe(0),
International Patient Organisation for Primary Immunodeficiencies(0),
LUPUS Europe(0),
Malta Health Network - MNH(0),
National Voices (UK)(0),
Pancyprian Federation Of Patients Associations and Friends(0),
Retina Europe(0),
SUSTENTO - The Latvian Umbrella Body for Disability Organization(0),
COPAC (Romania)(0),
Association for the Protection of Patients' Rights (Slovak Republic)(0),
European Umbrella Organisation for Psoriasis Movements - EUROPSO(0),
European Headache Alliance & Migraine Association of Ireland - EHA(0),
European Forum for Psoriasis Patient's Associations in Europe - PE.Pso(0),
Confederation Health Protections - KZZ(0),
National Patients' Organisation of Bulgaria - NPO(0),
APAI - Associazone Patologie Autoimmuni Internazionale(0),
Debra Europe - Organisation of people with epidermolysis bullosa(0),
ECPP - European Coalition of Positive People(0),
European Alliance of Genetic Support Groups(0),
European Institute of Women's Health(0),
European Men's Health Forum(0),
HOPA - Hungarian Osteoporosis Patient Association(0),
Mental Health Europe(0),
European Cleft Association - ECO(0),
BAPD - Bulgarian Association for Patients Defense(0)EuropaColon(0),
European Liver Patients Organization - ELPA(0),
European Network of Fibromyalgia Associations (ENFA)(0),
World Federation of Incontinent Patients (WFIP)(0),
Association of Medical Research Charities – AMRC(0),
European Federation of Neurological Associations – EFNA(0),
International Osteoporosis Federation – IOF(0),
Pulmonary Hypertension Association Europe - PHA Europe(0),
Medical Research Charities Group (MRCG)(0),
EHC - European Haemophilia Consortium(0),
KUZ - Koalicija Udruga u Zdravstvu(0),
EATG - European Aids Treatment Group(0),
HAPO - Hungarian Alliance of Patients' Organisations (BEMOSZ)(0),
The ALLIANCE - Health and Social Care Alliance Scotland(0) -
Financial Data
Closed financial year
Jan 2014 - Dec 2014
Lobbying costs for closed financial year
None declared
EU grant income for closed financial year
653,966 € (Source: European Commission)
Other financial info
Our financial information is published yearly on our website, and in EPF annual report available from EPF website.
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EU Structures
Groups (European Commission)
None
ACC
Expert Groups: Working Group on Patient Safety and Quality of Care (Active); Working Group on Health Workforce (active) ,Medical Devices Expert Group (passive), Impacts, challenges and limitations of EU-funded public health research - Priorities for future research (no longer active),
Groups (European Parliament)
None
Communication activities
EPF is a partner in various EU projects:
• EMPATHiE (December 2013-September 2014)
• European Patients’ Academy on Therapeutic Innovation (2012-2017)
• European Union Network for Patient Safety and Quality of Care (PaSQ) (April 2012-April 2015)
The full list of our current and past projects is available at: http://www.eu-patient.eu/whatwedo/Projects/
Our most recent position papers include (published in late 2014-2015):
• Clinical trials results – communication of lay summary: http://www.eu-patient.eu/globalassets/policy/clinicaltrials/epf-lay-summary-position-march-2015.pdf
• Discrimination in healthcare: http://www.eu-patient.eu/globalassets/policy/anti-discrimmination/epf-position-discrimination-jan2015.pdf
• Adherence to therapies: http://www.eu-patient.eu/whatwedo/Policy/Adherence-to-therapies-Compliance-Concordance/
• In vitro diagnostics medical devices: http://www.eu-patient.eu/globalassets/policy/medicaldevices/epf-recommendations-council-ivd-nov14.pdf
All our positions are published on our website at: http://www.eu-patient.eu/whatwedo/Policy/A-Z-list-of-topics/
Recent events:
Regional conferences and workshop on Patients’ rights in Cross Border Healthcare: http://www.eu-patient.eu/whatwedo/Policy/Patients-Mobility/
Other:
• EPF Campaign 2014 patients+ Participation= our voice for a healthier Europe: http://www.eu-patient.eu/whatwedo/EPFCampaign2014Elections/
• EPF established, along with other organisations, the campaign of the European Data in Health Research Alliance: http://www.datasaveslives.eu/Other activities
• European Commission: EPF is a member of the European Health Policy Forum. EPF also participates in the European Innovation Partnership on Active and Healthy Ageing.
• EU Agencies: EPF is member of the Patient and Consumer Working Party of the European Medicines Agency (EMA), and 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 annual report for more information: http://www.eu-patient.eu/library/annual-reports111/- Meetings
Meetings
26 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 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 - Fresenius Kabi Deutschland GmbH
- European Federation of Pharmaceutical Industries and Associations
- Novo Nordisk A/S
- European Chemical Industry Council
- MEDICINES FOR EUROPE
- Leuphana Universität Lüneburg
- The European Association of Hospital Pharmacists
- Bureau Européen des Unions de Consommateurs
- SANOFI
- Pfizer Inc.
- Phamaceutical Group of the European Union
- Medichem, S.A.
- Teva Pharmaceuticals Europe BV
- European Healthcare Distribution Association
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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 - Thierry Breton (Commissioner)
- Agnieszka Skonieczna (Cabinet member)
- Eszter Batta (Cabinet member)
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 - Alina Timofte (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
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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
- International Diabetes Federation European Region
- European Cancer Patient Coalition
- Stichting Health Action International
- EUROPEAN ORGANISATION FOR RARE DISEASES
- Bureau Européen des Unions de Consommateurs
- European Federation of Allergy and Airways Diseases Patients' Associations
- ASDM Consulting
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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 - Vytenis Andriukaitis (Commissioner)
- Paula Duarte Gaspar (Cabinet member)
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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 - Annika Nowak (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
- Meetings