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Active participant in developing the PEQG Active participant of PFMD Framework building workshops. PFMD Contributor network comprises 76 participants representing different stakeholder groups (Industry, Patient Associations, Researchers, Academics, independent experts).


Benjamin Missbach

Project Manager — Open Innovation in Science

Wien, Austria

Ludwig Boltzmann Society

Ashley Duenas



David Feldman

Medical Project Director at National Kidney Foundation

Duane Sunwold

Rob Camp



Lavaur, France


Wafae Iraqi


Benjamin Keserue

Maarten Kraaijenhagen

Stuart Miller

Director of Strategic Planning & Government Affairs IGAN Foundation


Janet Peterson

Severine Wollenschneider


Basel, Switzerland

F. Hoffmann La Roche

Jonathan Santos

Basel, Switzerland


Laurence Labey

Global Compliance Officer R&D, Medical and Industrial Affairs, Ethics & Business Integrity


Matt Reaney

Head of Patient Reported Outcomes


Muriël Marks

Member of the Board of Directors/Executive Director


The World Alliance of Pituitary Organizations (WAPO)

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Åsa Magnusson

Compliance Manager

F. Hoffmann La Roche

Kathryn Oliver

Chair and Co-Director

International Brain Tumour Alliance (IBTA)

Claire Nolan

Research Involvement Manager

United Kingdom

Parkinsons UK

Šarūnas Narbutas

Patient advocate, lawyer, policy advisor, researcher, consultant

Lithuanian Cancer Patient Coalition (POLA)

Peter Bates


Nottingham, United Kingdom

Peter Bates Associates

Inês Alves

Patient expert representative. Patient Health Services Adviser. Member of BOND European Reference Network.

Evora, Portugal

ALPE Foundation

Carol Meyer

R&D Patient Engagement Lead

Deerfield, United States

Takeda Pharmaceuticals

Suzanne Maahs

Multi Therapeutic Area Clinical Sciences Manager


Dawn DiCandilo

Patient Centricity Excellence Director, Global Medical Affairs


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Amy Cook

Patient and Investigator Relations


Christy Anton

Director of the Clinical Trials Support Office

Ferdynand Hebal

Lead Clinical Research Coordinator

Ann & Robert H. Lurie Children’s Hospital of Chicago

Katie Mazuk

Senior Director, Investigator & Patient Engagement

Titusville, United States

Janssen - Johnson & Johnson

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Karlin Schroeder

Associate Vice President, Community Engagement

Parkinson's Disease Foundation

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Kyle Srinivasan

Patient Engagement Director

F. Hoffmann La Roche

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Daphnee Pushparajah

Associate Director, External Engagement


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Vanessa Ferreira

Patient Advocacy Manager

Santhera Pharmaceuticals

Lorna Rixon

Research Fellow

City University of London

Jennifer Preston

Senior Patient and Public Involvement Manager

Liverpool, United Kingdom

University of Liverpool, Institute of Translational Medicine

Julie Hapeshi

Deputy Director

Katherine Deane

Senior Lecturer in Research at University of East Anglia

University of East Anglia

Natasha Ratcliffe

Research Involvement Manager

London, United Kingdom

Parkinsons UK

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Laure Delbecque

Research Scientist - Patient Focused Outcomes Center of Expertise


Pharmerit International / Lilly

Anna Truppel

Head of Patient Engagement, PD Medical Affairs

Basel, Switzerland

Jean-Christophe Reglier

Medical Director


Michele Robbins

Senior Director - Global Strategic Initiatives

United Kingdom

ViiV Healthcare

Lilia Petit Ben Saidane

Program Manager & Independent trainer


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Soren Eik Skovlund

Senior Researcher, Intl Advisor, People-Centered, Value-Based Healthcare


DrugStars / Aalborg University

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Jan MacDonald

Head Patient Information Quality

Ken Bond

Director, Patient Engagement, Ethics, and International Affairs

Canadian Agency for Drugs and Technologies in Health (CADTH)

Birgitta Grundmark

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Patrick Miqueu

Coordinator - Research Promotion & Patient Collaborations

Institut Jules Bordet

Trevor Gibbs

Russell Wheeler

Patient Advocate

Kathryn Pucci

Senior Vice President

United States


Sue-Ann Costa Clemens

Deputy Director

Gregoire Gauthier

Head of Product Design



Philibert Goulet

Deputy Compliance Officer; Director, Risk Management and Compliance

Vinciane Pirard

Senior Director Public Affairs, Member of EU Commission Expert Group on Rare Diseases

Sanofi Genzyme

Neil Bertelsen

Chair, HTAi Patient and Citizen Involvement Interest Group


Poonam Medberry

Senior Director, Product Development, Clinical Science Business Operations

Genentech, A Member of the Roche Group

Nadia Hergli

Area Medical Lead MEA CIS Rare Diseases & Gene Therapy R&D Global Medical Affairs

Sheila Khawaja

Patient engagment advisor | co-creator | catalyser

San Canzian dIsonzo, Italy

The World Alliance of Pituitary Organizations (WAPO)

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Elisa Ferrer

Patient engagement manager

Barcelona, Spain

EURORDIS - Rare Diseases Europe

Jane Zeller Wynen

Oleksander Gorbenko

Global Patient Affairs Medical Lead

United Kingdom

Ipsen pharma

Marc Dechamps

Managing Director

Waterloo, Belgium

XMF Consulting

Oliver Ebert

Medical Development Director, Adjunct Professor of Medicine


Cara Eves

Associate General Counsel


Sangeeta Jethwa

Patient & Population Director, Rare Diseases

Stephen Yates

Clinical Program Director

Raleigh, United States


Sarah Gould

Non clinical regulatory/toxicology consultant

Rana Grillberger

Independent Expert

Tsveta Schyns

Consultant Scientific Projects Europe, Molecular Biologist

European Network for Research on Alternating Hemiplegia (ENRAH)

Sarah Krug

Executive Director

New York, United States

CANCER101 / Society for Participatory Medicine

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Leilah Sampson

Renal Patient Advocate, Writer, Speaker

Roslyn Schneider

Global Patient Affairs Lead, Pfizer Medical

New York, United States


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Begoña Nafría Escalera

Patient Expert Reviewer en Research Involvement and Engagement Journal

Esplugues de Llobregat, Spain

Sant Joan de Déu Children's Hospital / Sant Joan de Déu Research Foundation / From Testing to Targeted Treatments (FT3)

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Society for Participatory Medicine

The World Alliance of Pituitary Organizations (WAPO)

Patient Advocacy Organization