Past Speakers
26-28 October 2026
RAI Congress Center, Amsterdam
Charlie Aardewijn, Researcher and patient-voice advocate, VU Amsterdam
OMAR ALI, FORMER ADVISER NICE / HEAD OF PAYERS, VERPORA
Vytenis Andriukaitis, MEP, European Parliament
Alisha Angdembe, Senior Health Economist, Visible Analytics
Kim Angel, Executive Director, International MPS Network
Derek Ansel, Vice President, Therapeutic Strategy Lead, Rare DiseaseRare Disease, worldwide clinical trials
Anjan Aralihalli, Founder, Raya Therapeutic, Inc.
Astri Arnesen, President, European Federation of Neurological Associations
Anke Arnold-Tugulu, Chief Regulatory Officer, Azafaros
Dimitrios Athanasiou, BoD, WORLD DUCHENNE ORGANIZATION / UPPMD
Miranda Bailey, Associate Vice President, HEOR & Pricing, Rocket Pharma
Annette Bakker, CEO, Childrens Tumor Foundation
Andy Barrick, CEO, Multiple System Atrophy Trust UK
Fabienne Bartoli, Inspector General, French National Authority for Health
Stefano Benvenuti, Head of Public Affairs and Market Access, Chair of IRDiRC Funders Constituent Committee (CCC), Fondazione Telethon
Juliane Bernholz, CEO, A.M. Pharma
Corinne Blanchet, Executive Director, Program Delivery, Rare Disease & Pediatrics, Premier Research
Lara Bloom, President and CEO, The Ehlers-Danlos Society
Thomas Bols, Head of Government Affairs and Patient Advocacy, EMEA & APAC, PTC Therapeutics
Matt Bolz-Johnson, Mental Health Lead & Healthcare Advisor, EURORDIS
Donato Bonifazi, Board Member, Teddy European Network of Excellence for Paediatric Research
Angela Borghouts - de Ruijter, Associate Director Market Access, Gilead Sciences
Mathieu Boudes, Senior Advisor, FIPRA
Anissa Bounabi, Assistant scientific coordinator, ERDERA - INSERM
Mona Boyé, CBO, Ksilink
Sara Brambilla, Global Programme Manager, Rare Diseases International
Thomas Broekhoff, Project Manager, hollandbio
Pascal Brokmeier, Head of Engineering, Every Cure
Paul Broomhead, Head of Site, SGS Integrated CDMO Solutions
Henriette Burghoorn, Associate Director, Market Access, Gilead Sciences
Sytse Buruma, V&A, Biogen
Jonathan Campbell, Chief Science Officer, National Pharmaceutical Council
Pedro Campino, Sr. Dir., Regulatory TA Lead – Immunoglobulins, CSL Behring
Lorenzo Capretto, Market Access Lead EU&EM, Global Rare Disease, Chiesi Farmaceutici SpA
Beatriz Carmona-Hidalgo, Postdoctoral Researcher, Junta de Andalucía
Toby Carter, Medical Informatics Adviser, Dendrite Clinical Systems
Rosa Castro, Public Affairs Director, EURORDIS
Nathan Chadwick, Senior Director, Therapeutic Strategy Lead - Rare Disease, worldwide clinical trials
Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, SANOFI
Fleur Chandler, Patient Advocate and Health Economist, Duchenne U.K.
Yiwei Chen, Founder, Wonder Sir
Wing yun Cheung, General Manager, Terrapinn Holdings Ltd
William Cole, Life Science Partnership Manager, Kidney Research UK
Giulia Colombo, Global Director Payer Partnership, csl
Giorgia Crimi, Patient Advocacy Manager, Fondazione Telethon
Joslyn Crowe, Patient Engagement & Advocacy, Lexeo Therapeutics
Andrew Cummins, Vice President of Business Development, Sciensus
Pam Cusick, Senior Vice President, Rare Patient Voice, LLC
Marcin Czech, Professor, Institute Of Mother And Child
Magdalena Daccord, Chief Executive Officer, FH Europe Foundation
Vincent Damotte, Scientific Project Manager - INVENTS, INSERM
Elly Darkin, Director, Government Affairs & Policy, Europe & Canada, Rare Diseases, Alexion – AstraZeneca Rare Disease
Bendert de Graaf, President, Bardet Biedl Syndroom Stichting
Elizabeth De Lange, Professor in Predictive Pharmacology, Leiden Amsterdam Center for Drug Research LACDR
Daniele De Ritis, Researcher, San Raffaele Scientific Institute
Elizabeth DeFendis, Government Business Development Specialist, BRCR Global
Hanka Dekker, exec director, VKS
Julien Delaye, Patient Engagement Manager – HTA, EURORDIS, EURORDIS
Súil Delgado-Collins, Associate Principal, CRA, Charles River Associates
Dante Di Iulio, Public Affairs Lead, EU & Int'l, Rare Diseases, Chiesi Global Rare Diseases
Toon Digneffe, Head, Public Affairs & Public Policy, Europe & Canada, Takeda
Danielle Dong, Global Medical Scientific Advocacy Lead, Rare Disease, Sanofi
Samuele Doratori, Head of Neurology, Servier
João Duarte, Vice President, Head of Global Regulatory Affairs Excellence, Ipsen
Jessie Dubief, Social Research Director, EURORDIS
Nevan Elam, Founder and Chief Executive Officer, Rezolute, Inc.
Elsie Evans, Ambassador Programme Project Manager, FH Europe Foundation NGO
Elise Evers, Senior Consultant, Initiate
Karen Facey, Chair HTAi Rare Disease Interest Group, University of Edinburgh
Jennifer Farmer, CEO, FARA
Roseline Favresse, Research Policy Director, EURORDIS
Rita Francisco, Survey Project Manager, EURORDIS
Pedro Franco, Head of Europe Global Regulatory and Scientific Policy, Merck
Lydia Frick, Director Market Access, Kintiga
Thom Frielink, Sr. Associate, Curie Capital BV
Patricia Furlong, President, Parent Project Muscular Dystrophy
Maciej Gajewski, Vice President, Head Global Corporate Affairs, Rare Diseases, Ipsen
Viviana Giannuzzi, Head of Research and Innovation Department, Fondazione per la ricerca farmacologica Gianni Benzi onlus
Erwan Gicquel, Government Affairs Head, Miltenyi Biotec
Diego Fernando Gil Cardozo, President, Enfermedades Raras en el Caribe y América Latina (ERCAL)
Sonia Gobeil, Cofounder, Ataxia of Charlevoix-Saguenay Foundation
Josie Godfrey, Director, JG Zebra Consulting
Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals, Zorginstituut
Adrian Goretzki, President, Healthcare Education Institute
Johanna Grames, Team Lead, Global Gov.Aff.&Patient Advocacy, AOP Health
Alicia Granados, Global Head Scientific Advocacy and Insights, Sanofi
Anabel Granja Dominguez, Researcher, Junta de Andalucía
Chris Grimes-Crompton, Principal Consultant, DECISIVE CONSULTING LTD
Jaap Groothoff, Medical Specialist, Amsterdam umc
Marcus Guardian, CEO, International Horizon Scanning Initative
Kevin Hammon, Vice President, EQT Life Sciences
Rachel Harrison, Director, Managed Access Program, argenx
Hannah Harvey, Projects Manager, Beacon for rare diseases
Christian Hebenstreit, Founder, Moleculeo
Matthias Heck, Senior Advisor, EUCOPE
Niklas Hedberg, Head Of Pharmacy, Tandvards och Lakemedelsformansverket
Victoria Hedley, Rare Disease Policy Manger, Newcastle University
Debbie Hellenbrand, Patient advocate and Professional Speaker, Pathways to Trust
Remon Helmy, Associate Director HEOR, Alexion
Ralf-Dieter Hilgers, Professor, Sigmund Freud Private University
Carla Hollak, Professor Genetic Metabolic Diseases, Amsterdam umc
Jamie Holyer, Senior Director, Patient Engagement & Government Affairs, Norgine
Sebastian Honoré, CEO, Cure Lowe Foundation
Patrick Hopkinson, Independent HTA Expert, Independent HTA Expert
Julian Howell, CEO, PharmaKrysto Ltd
Ralph Hughes, Chief Business Officer, Faron Pharmaceuticals Ltd
Raymond Huml, Vice President, Rare Disease Strategy, Sciensus
Julian Isla, Director, Foundation 29
William Jang, Managing Director of Global Business Development, BioMe, Inc.
Amelia Jones, Marketing, HEOR
Anneliene Jonker, Rare Disease Therapy Researcher, University of Twente
Jesper Jorgensen, New Product Planning Lead, UCB
Ron Jortner, Founder & CEO, Aspire Biosciences
Bojan Jovic, Medical Director, Allucent
Daria Julkowska, Scientific Coordinator, ERDERA - INSERM
Gila Jung, national Patient Advocacy Manager, Chiesi
Mats Karlsson, Professor of Pharmacometrics, Uppsala University
Tina Karunaratne, Board Member, Pathways to Trust
Manohar Katakam, Chief Executive Officer, SteroTherapeutics
Hadhami KHAMASSI, Global Regulatory Affairs Rare Diseases - Senior Manager, Ipsen
Anna Kole, Global Patient Engagement Lead, UCB Pharma
Jonathan Kornstein, VP, Rare Disease & Pediatrics Clinical Development, Caidya
Stelios Kympouropoulos, f.MEP, European Parliament
Christina Kyriakopoulou, Policy Officer, Health Research Programmes, European Commission
Yannick Lampo, BD, Sherwood Pharmaceuticals
Samantha Lawes, Director of Research Development & Partnerships, Kidney Research UK
Patroski Lawson, CEO, KPM Group DC
Yann Le Cam, Founder & Past-CEO of EURORDIS-Rare Disease Europe, VOZ Advisors
Jen Lee, Principal Consultant, HEOR Ltd
Mimi Lee, Cheif of Precision Medicine, GeneDx
Fabrice Lejeune, CSO, Genvade Therapeutics
Vincent Lévêque, Co-founder & CEO, Mirava Bio
James Levine, President of Foundation, Fondation Ipsen/Fondation de France
Daniel Lewi, Co-founder & Chief Executive Officer, The Cure & Action for Tay-Sachs (CATS) Foundation
Kieron Lewis, Director of Strategic Consulting, Clinigen Group
Chyrel Lichaa, HoFH Patient Ambassador, FHEF
Caroline Ling, Vice President, Value & Access, RTI Health Solutions
Gisela Linthorst, Head of Patient Engagement and Advocacy, Azafaros
MI LIU, Professor, Soochow University
Cheryl Lloyd, President and Executive Director, Pathways to Trust
Mathieu Loiseau, Director of Rare Clinical Services, Sciensus
Veronica Lopez Gousset, DrPH candidate, Harvard T.H. Chan School of Public Health
Joshua Lorenz-Guertin, Vice President, Research & Development, Sharp Therapeutics
Sylwia Łukomska, President / Founder, MG Association - Face to Face
Flaminia Macchia, Chief Operating Officer, ORPHANET-AISBL
Victor Maertens, Government Affairs Director, European Confederation of Pharmaceutical Entrepreneurs (Belgium)
Karen Malone, CEO, GeneScape
Francesca Maltecca, Group Leader, San Raffaele Scientific Institute
Jeevan Mann, Associate Board Member, Pathways to Trust
Silvy Mardiguian, Head of HEOR, Europe & New Markets, BeOne Medicines
Aurora Mateos, Founder & Director, Menkes International Association
Cécile Matthews, Vice President, Life Sciences, CRA, Charles River Associates
Jim McGrath, Director of Commercial Policy, Irish Pharmaceutical Healthcare Association
Aisling McMahon, Kidney Research UK
Miriam Meeuwissen, CEO Launch & Lifecycle Biopharma, Italfarmaco
Michelle Mellion, Chief Medical Officer, EveryONE Medicines
Michael Merchant, Scientific Adviser, National Institute for Health and Care Excellence
Susanne Michel, Head of Market Access and HEOR Europe, Clinigen
Yanis Mimouni, Associate Director, Regulatory Science, Critical Path Institute
Warnyta Minnaard, Patient advocate, Missie Tumor Onbekend
Jan Mol, Patient Advocate, Hematon
Peter Mol, UMCG - University Medical Center Groningen
Clément Moreau, Project manager, ERDERA - INSERM
Paolo Morgese, Vice President, Public Affairs, Europe, Alliance for Regenerative Medicine
Maria-Cruz Morillo, Global Therapeutic Operations Lead, Rare Diseases, Allucent
Juliet Moritz, Senior VP Strategic Solutions and Patient Centricity, ERGOMED Clinical Research
Josephine Mosset, Senior Policy Officer, Cancer Patients Europe
Sophie Muir, Chair of Trustees, Timothy Syndrome Alliance (TSA)
Andrew Mumford, Chief Executive Officer, Initiate Consultancy
Cristobal Muñoz-Sánchez, Project management/RDIG projects coordinator, Junta de Andalucía
Rima Nabbout, MD/PhD, Hopital Necker- Enfants Malades
Kahina NASRI, Global Regulatory Affairs Director, Ipsen
Alexander Natz, Secretary General, EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
Jonathan Neal, Head of Central, South and Eastern Europe Takeda and EFPIA European Markets Committee, Takeda
Douglas Niven, Strategy Leader in Market Access, Sciensus
James Oakley, CEO, Keep Me Breathing
Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI
Timothy Ogden, Executive Director, Bardet Biedl Syndrome Foundation
Cécile Ollivier, Regulatory Science Advisor, Critical Path Institute
Paula Orandash, Director, Patient Engagement, ERGOMED Clinical Research
Monica Otto, Associate Professor of Practice, SDA Bocconi School of Management
Francesc Palau, Distinguished Investigator, SJD Barcelona Children's Hospital
Francis Pang, SVP Global Market Access and International Geographic Expansion, Orchard Therapeutics
Samantha Parker, Patient Engagement Lead Rare Diseases and Vice Chair of IRDiRC, Italfarmaco
David Pearce, Chair, International Rare Disease Research Consortium (IRDiRC), Sanford Health
Luis Pereira de Almeida, Professor, University of Coimbra
clive phillips, CEO, Making the Most of Now
Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group
Giulia Pierini, Partner, Strategic Patient Engagement & Advocacy, Alira Health
Vinciane Pirard, Medical - SAI, Chair of IRDiRC Companies Constituent Committee (CCC), Sanofi
Anke Pisters-van Roy, MD, CZ
Michele Pistollato, Principal, Charles River Associates
Sonia Pulido Sánchez, HTA Project Manager/JSC SG Co-chair, AEMPS
Tom Pulles, MD, VP, Head of Medical Affairs & Patient Advocacy, Europe, Acadia Pharmaceuticals Inc.
Vinciane Quoidbach, Manager, Public Health And Policy, Research Project, European Brain Council
Carelle Reparon-Schuijt, Medical Advisor IMF, Zilveren Kruis
Sumira Riaz, Psychologist and founder, Unboxed Psychology
Shawn Ritchie, Chief Executive Officer, Med-Life Discoveries
Stephane Ritty, CPO, Trialize
Georgia Roberts, Senior Consultant HTA, Initiate
Lauren Roberts, Head of Development, Rareminds
Kit Roes, Professor, RadboudUMC
Kent Rogers, CEO, EveryONE Medicines
Stefano Romanelli, Government Affairs Associate Director, European Confederation of Pharmaceutical Entrepreneurs (Belgium)
Clara Romero, Account Director, FIPRA International
Andres Rondon, RWE Porfolio Head, Clinical Development, Sanofi
Kacper Rucinski, Project Lead, European Alliance of Neuromuscular Disorders Associations
Christopher Rudolf, Founder & CEO, Volv Global
Pierantonio Russo, FCCP, FAAP, STS, Corporate Chief Medical Officer, Eversana
Adrien Samson, Healthcare policy senior manager, EuropaBio
Stefaan Sansen, Scientific Director, Sanofi Genzyme
MARIEM SARGHINI, Associate, Pathways to Trust
Maurizio Scarpa, Director, Coordinating Center For Rare Diseases, MetabERN
Sophie Schmitz, Managing Partner, Partners4Access
Jennifer Schranz, SVP, Global Head Rare Diseases, Ipsen
Dieter Schultewolter, Head of Global Medical Affairs Neuroscience, Teva Pharmaceuticals
Jörg Schüttrumpf, Chief Scientific Innovation Officer, Grifols
Boris Sevarika, Co-Founder and CEO, NanoZymeX
Ruchi Sharma, CEO, Stemnovate Limited
Mark Sheehan, Professor, University of Oxford
Lydia Shotton, Associate Director EU Government Affairs, Alliance for Regenerative Medicine
Diana Sinkevich, VP Market Access and HEOR, Chiesi
Claire Skentelbery, Director General, EuropaBio
Laurens Sluijterman, Postdoctoral Researcher, RadboudUMC
Tara Smith, Exec VP, Innovative Therapies, Med-Life Discoveries
Rachel Smith, Vice President Therapeutic Area Lead, Parexel International LLC
Trevor smith, VP, Inovio
Adlane Soudani, Global Asset Lead Rare Disease, Ipsen
Alberta Spreafico, Senior Vice President, Health Innovation, Eversana
Joe Standing, Professor of Pharmacometrics, University College London
Lotte Steuten, Deputy CEO, Office of Health Economics
Leonid Stoianov, CEO, Trialize
Pernille Amalie Storm, Managing Partner, Access Elevate
Violeta Stoyanova-Beninska, Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC, former Chair of COMP at EMA, EMA
Ales Strancar, MD, Sartorius BIA Seperations
Gerdi Strydom, Managing Director, Valid Insight
Karina Sturm, Patient Advocate/Journalist, Connective Tissue Coalition
Donna Sullivan, Director of Patient Advocacy, Pathways to Trust
Kwee Lan Tan, Head of Team Regional Regulatory Lead, Boehringer Ingelheim
Jose Terencio Alemany, Senior Vice President of Discovery, GRIFOLS SA
Nitza Thomasson, Executive Director, Global Head of R&D Neurology, Servier
Andrew Thomson, Consultant, Regnitio
Eleanor Thurtle, Principal Consultant, Costello Medical
Lonneke Timmers, strategic advisor, Zorginstituut Nederland / National Health Care Institute
Tracey Tingle, Director, Commercial Strategy, Market Access, WEP Clinical
David Topolczay, Head of Strategy and Licensing, CDT Equity
Sven Tops, Chief Market Access Officer, Kintiga
Ashley Toye, CSO, Scarlet Therapeutics
Giuseppe Turchetti, Full Professor in Economics and Management of Innovation in Healthcare, Scuola Superiore Sant’Anna
Sophie H. Turner, Founder & Strategic Patient Advocate, Empowered By Us
Sheela Upadhyaya, Life Science Advisor in Rare Diseases, Openflex Ltd
Anton Ussi, CEO, EATRIS ERIC
Janneke van de Kamp, CEO, Norgine
Bart van de Warrenburg, Professor of Neurology, RadboudUMC
Silvia van der Flier, Medical Advisor, Vgz
Monique van Scherpenzeel, CEO and founder, GlycoMScan B.V.
Leon van Wouwe, Clinical Innovation Director, Volv Global
Benjamen Varsano, Director, Operational Strategy, ERGOMED Clinical Research
Johan Verbeeck, Statistician, Hasselt University
Miikka Vikkula, Professor of Human Genetics, de Duve Institute
Delphine Wagner, Senior Director, Regulatory Affairs, Kinesys Consulting
Miriam Wagner Long, Project Mercury // World FSHD Alliance, FSHD World Alliance // FSHD Society
Julia Wahl, Partner, Copenhagen Economics
Katie Waller, Head of Patient Programmes, The Lily Foundation
Mary Wang, Director, Patient Engagement, Genespire
Albert Wiegman, Professor of Pediatrics, Amsterdam umc
Michael Wilbur, Founder, MW Advocacy Solutions
Anne Willemsen, Co-chair JCA Subgroup, Zorginstituut Nederland
Kate Witkowska, Strategic Partnerships Director, Genomics England
Sorrel Wolowacz, Head European Health Economics, R.T.I. Health Solutions
Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International
Wieteke Wouters, Programme Director, hollandbio
Kaja Zarakowska, Head of Medical Diagnosis Innovation, UCB
Chris Zhou, Vice President, ACA Pharma
Martine Zimmermann, Senior Vice President, Head of Global Regulatory Affairs, Ipsen
Sarah Zohar, Head of Research team HeKA, INSERM
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