Ways of Working

The multi-stakeholder Alliance is governed by principles and values that underpin the joint working interactions, as well as the objectives and modus operandi for TRANSFORM.

Steering Group

The current steering group members are:

Martine Pergent
International Patient Organization for Primary Immunodeficiencies (IPOPI) – representing patients and patient organisations
Claire Booth
European Society for Gene and Cell Therapies (ESGCT) – representing clinicians
Giovanni Migliaccio
European Pediatric Translational Research Infrastructure (EPTRI) – representing the research community
Victor Maertens
European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) – representing the pharmaceutical industry

The TRANSFORM Steering Group is nominated by the Alliance Members from the general membership for a renewable two-year mandate. The Steering Group represents all constituencies of the initiative, i.e.: one patient representative, one clinician representative, one research representative, and one industry representative. The role of the Steering Group is to (i) take decisions about the strategic direction of TRANSFORM, including review of activities and preparation of the work plan for the following year; (ii) to lend leadership and guidance in the delivery of TRANSFORM’s vision, mission, goals and strategy; and (iii) represent TRANSFORM externally e.g. at events, and ensure to speak consistently with one voice and promote TRANSFORM’s messages/recommendations which were agreed through consensus.

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Individuals joining in their own capacity

Individuals who do not represent organisations may be invited to provide input and participate in events. The intent will be for individuals to join in an organisational capacity where possible.

Marc Dooms
Senior Orphan Drug Pharmacist, University Hospitals Leuven
Stuart Faulkner
Programme and Operations Manager at the Center for the Advancement of Sustainable Medical Innovation (CASMI), Oxford University
Pauline Meij
Head of Production ATMP, Leiden University Medical Center (LUMC)
Dominique Bremond-Gignac
Professor of Ophthalmology, Head of Ophthalmology Department, University Hospital Necker-Enfants malades and Paris University in Paris

TRANSFORM members are representatives of organisations or consortia with an expertise on gene & cell therapies. They are representing different sectors, namely patients, clinicians, research institutes, academia and companies with an interest in gene & cell therapies. The role of Members is to define and advance the strategic intent of TRANSFORM, namely the determination of the TRANSFORM vision, mission, goals and executive strategy, tactical implementation and performance evaluation. They contribute in drafting TRANSFORM’s evidence-based positions, designing how TRANSFORM presents itself externally and which platforms should be used to communicate about the goals, consensus position and research.

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European Medicines Agency

Observers of the initiative are organisations for whom full membership is not possible. Observers participate in the work of the Alliance: they may be invited to provide input and participate in events and meetings of the Members in an observer capacity, and they participate in the appropriate dissemination of the Alliance’s messages and materials.

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Informal Partnerships

Active Citizenship Network (ACN)

TRANSFORM may enter informal partnerships with other Alliances or groups which support TRANSFORM’s objective to enable safe and timely access to ATMPs for patients. The purpose of such informal partnerships is to ensure complementarity between initiatives, amplify common messages and optimize communication on topics of common interest. Such partnerships may take the form of collaboration on one-off events or ad-hoc calls with TRANSFORM Alliance members to exchange information. TRANSFORM entering into an informal partnership with an organisation or initiative does not necessarily entail alignment with all the views of the partnering organisation or initiative.

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The TRANSFORM Alliance and MEP Interest Group are supported by a Secretariat providing strategic advice and practical support in the implementation of TRANSFORM’s strategy and annual work programmes.

The TRANSFORM Secretariat is run by FIPRA International, Rue de la Loi 227, 1040 Brussels