Governance

The EUPATI Foundation is registered as an independent, non-profit organisation in the Netherlands and its formal name is ‘Stichting EUPATI Foundation’ (RSIN Number 861533197). It has the status of a “Public Benefit Organisation” (Dutch: Algemeen Nut Beogende Instelling, ANBI) in the Netherlands. Please find a downloadable version of the Statutes of the organisation and the ANBI at the bottom of this page.

EUPATI is a public-private partnership and its governance structure reflects this spirit.

Bodies

  • Board of Trustees
  • EUPATI Board
  • Sustaining Partners Assembly (including the National Platforms (ENP) Network)
  • Secretariat
  • Advisory Committees
The members and representatives of the different governance bodies exercise their office on a voluntary basis. They are entitled to compensation of expenses (e.g. travel and accommodation) according to the Foundations’ Policies and Procedures.

Board of Trustees

The Board of Trustees of the ‘Stichting’ EUPATI Foundation is composed by five members (in 2020):

  • Birgit Fischer, Germany – Chairwoman at the University Council of the Ruhr University Bochum and a consultant in health industry and public health.
  • Clayton Heijman, Netherlands (Treasurer) – Founder and a Director of Privium Fund Management.
  • Ivett Jakab, Hungary (Vice-Chair)- President of the European Patients’ Forum (EPF) Youth Group.
  • Jytte Lyngvig, Denmark (Chair) – Senior consultant with assignments for WHO, previously the Senior Vice President and Managing Director for DIA Europe.
  • Günter Stock, Germany – Chair of the Executive Board of the Einstein Foundation in Berlin.

For more information about the members of the Board of Trustees, please click here.

EUPATI Board

The EUPATI  Board sets the overall strategy and takes all major strategic decisions on the direction of EUPATI. It is chaired by a nominee of the EPF board and co-chaired by an industry representative nominated by the industry stakeholder cluster.

The new EUPATI Board, elected in 2020, is led by Anders Olauson from the European Patients’ Forum (EPF) as the Chair and Kay Warner from GlaxoSmithKline (GSK) as the Co-Chair. Both Anders and Kay have a long track-record in patient engagement and patient education and have contributed to EUPATI since the start. They picked up the baton from Nicola Bedlington (EPF) and Matthias Gottwald (Bayer) who have successfully steered the EUPATI ship since its launch.

In addition, each of the following stakeholder groups, as represented in the 4 clusters in the Sustaining Partners Assembly, can nominate 2 persons to represent them on the EUPATI Board:

– Chair: Anders Olauson (EPF)
– Co-chair: Kay Warner (GSK)
2 Patient Representatives: Brian West (EATG) and Derick Mitchell (IPPOSI)
2 Academic / NGO Representatives: Ingrid Klingmann (EFGCP) and Anne-Charlotte Fauvel (EATRIS)
2 Industry Representatives: Donatella Decise (Novartis) (and currently vacant seat)
2 National Platform Representatives: Sandrine Lavallé (EUPATI Luxembourg) and Filippo Buccella (EUPATI Italy)

Please see below and here more information about the EUPATI Board.

Sustaining Partners Assembly

The EUPATI Sustaining Partners Assembly (SPA) consists of all EUPATI Partners committed to supporting EUPATI through in-cash or in-kind contribution. Sustaining Partners set the strategic objectives of EUPATI.

The SPA is chaired by the EUPATI Board Chair and Co-Chair and is organised in four clusters of stakeholder groups:
– Patient organisations
– Industry
– Academia & NGOs
– National Platforms

Each cluster elects representatives to the EUPATI Board which oversees the implementation of the strategic direction of EUPATI.

EUPATI invites new members of all the different clusters to join the EUPATI, please contact us for more information!

EUPATI National Platforms (ENP) Network

The National Platforms Network (ENPs) consists of representatives of each of the EUPATI National Platforms (currently 23). Each National Platform elects one individual to the so-called ENP SPA Cluster, who then select two individuals to represent ENPs in the EUPATI Board. For more information on ENPs, please see here.

Secretariat

The EUPATI Secretariat implements the decisions of the EUPATI Board, the annual work plan and is responsible for the day-to-day operations of EUPATI. It is led by the Executive Director.

The team consists of:

  • Executive Director
  • Partnerships & Operations Coordinator
  • Training & Content Coordinator
  • Training Organisation & Alumni Coordinator
  • Patient Engagement Training Coordinator
  • Business Development Coordinator
  • Networks and Communications Coordinator
  • IT Coordinator
  • Project Management Consultant
  • Intern

To find our more about team, please see here.

Advisory Committees

EUPATI has several advisory committees that contribute to the various activities:

EUPATI Editorial Board

The EUPATI Editorial Board consists of 5 members representing all stakeholders. The Editorial Board reviews all new or updated content for EUPATI Toolbox and Patient Expert Course (including all related e-Learning and Face2Face course content). They guarantee that EUPATI content is well-focused, consistent, understandable, accessible and targeted. They also advice the EUPATI Secretariat about any content that needs to be updated, e.g. due to regulatory changes. The Editorial Board signs off on all EUPATI content before it is released to the public.

The members of the Editorial Board as of October 2020 are as follows:

  • Tamás Bereczky, EUPATI Secretariat, Coordinator
  • Magdalena Ankiersztejn-Bartczak, EATG
  • Birka Lehmann, Federal Institute for Drugs and Medical Devices, Germany (BfArM)
  • Wolf See, Ruhr University of Bochum
  • Léa-Isabelle Proulx, Roche

EUPATI Course Committee

The EUPATI Course Committee consists of representatives of all stakeholders, including a EUPATI Fellow.  It contributes to the conception, development, and implementation of the face-to-face training events of the EUPATI Patient Expert Training Course.

The members of the Course Committee as of October 2020 are as follows:

  • Ingrid Heyne, EUPATI Secretariat, Coordinator
  • Tamás Bereczky, EUPATI Secretariat, Co-Chair
  • Ingrid Klingmann, EFGCP, Co-Chair
  • Léa Proulx, Roche
  • Raquel Castro, EURORDIS
  • Birka Lehmann, Federal Institute for Drugs and Medical Devices, Germany (BfArM)
  • Donatelle Decise, Novartis
  • Joan Jordan, EUPATI Fellow
  • Daniel de Schryver, Janssen
  • Wolf See, Ruhr University of Bochum

English translation of ANBI status

As from August 11 2020 we designate your institution as a public benefit institution (algemeen nut beogende instelling – ANBI).

You had applied with a request to be classified as a public benefit institution. On the basis of the information provided by you it is evidenced that we can designate your institution as such.

This decision applies for an indefinite period of time. We can verify at a later stage whether your institution still meets the conditions.

Are there any changes that could have an impact on the ANBI-status? You must report these changes in writing to the ANBI-team.

You are receiving this decision on behalf of the inspector.