European Patients' Forum (EPF)

•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 is a member of the AMR patient Group, managed by Health First Europe. More information is available here: https://amrpatientgroup.eu/

•EPF is a member of the AMR Multistakeholder Partnership Platform. More information is available here: https://www.fao.org/3/cc3001en/cc3001en.pdf

•EPF is a member of the EU-JAMRAI 2 Stakeholder Forum. More information is available here: https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/projects-details/43332642/101127787/undefined?programmePeriod=2021-2027&freeKeywords=jamrai&order=DESC&page=1&pageSize=10

•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 other 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), the European Centre for Disease Prevention and Control (ECDC), and other including Civil Society Europe and European association working for carers (EUROCARERS).

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 also works together with international organisations like the Organisation for Economic Co-operation and Development (OECD) and the World Health Organization Regional Office for Europe (WHO)

Information on our cooperation with other bodies and organisations is available here: https://www.eu-patient.eu/about-epf/about-us/Cooperation/

The full list of our members is also available at this link: https://www.eu-patient.eu/globalassets/membership/list-of-epf-members-2.pdf

EPF membership consists of 79 members: 60 Full members, 18 Associate members, and 1 provisional member. Out of 79 members, 53 pan-European umbrellas and 26 organisations are active at national levels, representing 21 countries.

Does not represent commercial interests

Jan 2022 - Dec 2022

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.

2,370,907€

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/

eHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=2769 #Member #C#Civil society, Other#Medical Device Coordination Group#X03565#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3565 #Observer #C#Civil society#04 - Post-Market Surveillance and Vigilance (PMSV)#03 - Clinical Investigation and Evaluation (CIE)#Antimicrobial Resistance One Health Network#E03853#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3853 #Member #C#Civil society

N/A

Our recent relevant position papers include (published in 2023):
•EPF's reaction to the European Parliament’s adoption of the European Health Data Space report; December 2023.
•EPF’s Statement for the European Antibiotic Awareness Day. November 2023.
•EPF response to the European Commission’s call for feedback on the revision of the EU Pharmaceutical Legislation. November 2023.
•EPF’s position on establishing an opt-out system for the secondary use of health data. October 2023.
•EPF's paper on AI in Healthcare: Advancing Patient-Centric Care through Co-design and Responsible Implementation. October 2023.
•EPF's call on a patient-centred vision for Unmet medical needs. October 2023.
•EPF's reaction to the draft reports on the revision of EU pharmaceutical legislation. October 2023.
•EPF's call on ensuring access to paediatric medicines. October 2023.
•EPF's recommendations for a patient-centred revision of the EU pharmaceutical legislation. July 2023.
•EPF position statement EU4Health priorities. June 2023.
•EPF's statement on stepping up the involvement of the patient community in the fight against AMR. May 2023.
•EPF's reaction to pharmaceutical legislation revision. April 2023.
•EPF's reaction to the proposed amendments of the Medical Devices Regulation. January 2023.

All our positions, statements and briefings are published on our website at: http://www.eu-patient.eu/library/position-papers--briefings/

Recent events:
•11/12/2023 – EPF simulation workshop on the EU HTA Regulation
•13-16/07/2023 – Summer Training Course for Young Patient Advocates (STYPA)
•31/05/2023 – EPF member-only webinar on the revision of EU Pharmaceutical Legislation
•28/04/2023 – EPF's 20th Anniversary event
•29/04/2023 – EPF's Annual General Meeting


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/

None declared

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.

1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.

• 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	Karolina Herbout-Borczak (Cabinet member) Stella Kyriakides (Commissioner)
  Other Lobbyists	European Public Health Alliance

• Date	06 Mar 2023	Location	Brussels
  Subject	Pharma Strategy
  Cabinet	Cabinet of Vice-President Margaritis Schinas
  Portfolio	Promoting the European Way of Life
  Attending	Margaritis Schinas (Vice-President) Maria Luisa Llano Cardenal (Cabinet member)
  Other Lobbyists	European Public Health Alliance

• Date	21 Sep 2022	Location	Brussels
  Subject	Rare diseases
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Stella Kyriakides (Commissioner) Ines Prainsack (Cabinet member)
  Other Lobbyists	Alzheimer Europe EUROPEAN ORGANISATION FOR RARE DISEASES

• 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)

• 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	EUROPEAN ORGANISATION FOR RARE DISEASES

• 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	EUROPEAN ORGANISATION FOR RARE DISEASES

• 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	European Public Health Alliance

• 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	Pfizer Inc. Phamaceutical Group of the European Union

• Date	08 Apr 2021	Location	online
  Subject	Health Union
  Cabinet	Cabinet of Vice-President Margaritis Schinas
  Portfolio	Promoting the European Way of Life
  Attending	Margaritis Schinas (Vice-President) Catherine Sustek (Cabinet member)
  Other Lobbyists	Digestive Cancers Europe Biomedical Alliance in Europe

• 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	European Federation of Nurses Associations European Health Management Association asbl Boehringer Ingelheim

• 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) Thierry Breton (Commissioner) Agnieszka Skonieczna (Cabinet member)
  Other Lobbyists	European Federation of Nurses Associations European Health Management Association asbl Siemens Healthineers AG

• 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)

• 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	European Federation of Pharmaceutical Industries and Associations

• 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)

• 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)

• 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)

• Date	12 Nov 2019	Location	Brussels
  Subject	participation in high level forum
  DG	Health and Food Safety
  Attending	Anne Bucher (Director-General)

• 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)

• 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)

• 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)

• Date	23 May 2018	Location	brussels
  Subject	Discussion about collaboration with Sante
  DG	Health and Food Safety
  Attending	Xavier Prats Monné (Director-General)

• 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 ORGANISATION FOR RARE DISEASES Bureau Européen des Unions de Consommateurs

• 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)

• 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)

• 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)

• 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	European Critical Care Foundation

• 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)