Governance

The EUPATI Foundation is registered as an independent, non-profit organisation in the Netherlands and its formal name is ‘Stichting EUPATI Foundation’ (KVK number 80029019). 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:

  • Jytte Lyngvig, Denmark (Chair) – Senior consultant with assignments for WHO, previously the Senior Vice President and Managing Director for DIA Europe.
  • Ivett Jakab, Hungary (Vice-Chair)- President of the European Patients’ Forum (EPF) Youth Group.
  • Clayton Heijman, Netherlands (Treasurer) – Founder and a Director of Privium Fund Management.
  • Richard Bergström, Sweden  – Covid-19 Vaccine Coordinator for the Government of Sweden, previously Director General of EFPIA
  • Matthias Gottwald, Germany – Independent consultant, previously Head of R&D Policy and Networking at Bayer

 

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 patient representative proposed by the European Patients’ Forum (EPF) and co-chaired by an industry representative nominated by the industry stakeholder cluster.

The EUPATI Board is currently 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.

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: Paul Clift (EATG) and Derick Mitchell (IPPOSI)
2 Academic / NGO Representatives: Christine Kubiak (ECRIN) and Begonya Nafria Escalera (Sant Joan de Deu)
2 Industry Representatives: Donatella Decise (Novartis) and Daniel De Schryver (Janssen Pharmaceutica NV.)
2 National Platform Representatives: Sandrine Lavallé (EUPATI Luxembourg) and Jozef Glasa (EUPATI Slovakia)

 

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 Organisation & Alumni Coordinator
  • Patient Engagement Training Coordinator
  • Business Development Coordinator
  • Networks and Communications Coordinator
  • IT Coordinator
  • Open Classroom Coordinator
  • Project Coordinator
  • Intern(s)

To find our more about team, please see here.

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:

  • Jana Popova 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 Friends

EUPATI Friends is an informal group for individuals who have contributed to EUPATI in different capacities, but no longer have a formal role (e.g., former Partner representatives, Committee Members, Staff, Contributors, Advisors etc.) EUPATI Friends membership is by invitation and the group has no decision-making role.

The purpose is to network and stay connected, receive up to date information about the EUPATI Foundation – its vision, mission and ongoing activities, share thoughts and ideas about the future direction of EUPATI, solutions which promote the patient engagement agenda across all stakeholder groups,  and act as a think tank for all the EUPATI network.

 

Advisory Committee

The EUPATI Advisory Committee was active during the IMI-project period until 2017, and was re-initiated in 2021. It provides advice to the EUPATI Board of Trustees, the EUPATI Board and the Secretariat on issues pertaining to regulatory, HTA, ethics and other domains. It is composed of high-level representatives with long standing experience and credibility in medicines regulation, including policies covering information to patients’ and guidance on working with patients.  The current members are listed below:

  • Chairperson: David Haerry, Patvocates/EATG
  • Co-Chairperson: Wolf See, Ruhr University Bochum

Regulatory arm:

  • Birka Lehmann, ex BfArM – Lead
  • Gabriela Zenhäusern, Swissmedic
  • Heather Rogers, MHRA
  • Daniel O’Connor, MHRA
  • Fokaline Vroom, MEB
  • Leon Bongers, MEB
  • Juan Estévez Álamo, AEMPS
  • Christa Wirthumer-Hoche, AGES
  • Katharina Prenner, AGES

HTA arm:

  • Neil Bertelsen, independent – Lead
  • Karen Facey, independent

Ethics arm:

  • Ingrid Klingmann, EFGCP – Lead
  • Hugh Davies, independent
  • Uta Wernke, DLR

Future topics arm:

  • Nicola Bedlington, EPF – Lead
  • Jan Geissler, Patvocates
  • Matthias Gottwald, Independent
  • Tony Hoos, PFMD

Patient Expert Training Committee

Members of the multi-stakeholder EUPATI Patient Expert Training Committee contribute to the conception, development, and implementation of in-person and live streaming events linked EUPATI Patient Expert Training Programme. The composition of the committee changes regularly. The current members are listed below:

  • Chair: Ingrid Klingmann, European Forum for Good Clinical Practice (EFGCP)
  • Co-Chair: Ingrid Heyne, EUPATI Training Organisation and Alumni Coordinator
  • Donatella Decise, Novartis
  • Bruno Gago, University of Aveiro, ENP Portugal
  • Birka Lehmann, Senior Expert Drug Regulatory Affairs, lecturer University of Bonn
  • Wolf R. See, University Ruhr Bochum
  • Thomas Smith, EUPATI Fellow
  • Carla Torre, University of Lisbon
  • Natacha Vaz Liti, Associação Melanoma Portugal, EUPATI Fellow
  • Victoria Siegrist, Roche
  • Fiona Waters, Retina International, ENP Ireland
  • Jana Popova, EUPATI Patient Engagement Training Coordinator
  • Maria Dutarte, EUPATI Executive Director

 

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.