2026 Confirmed Speakers
26-28 October 2026
RAI Convention Center, Amsterdam
Dariusz Adamczewski, Managing Director, Children’s Tumor Foundation Europe
OMAR ALI, HEAD OF PAYERS; FORMER GOVERNMENT PAYER, VERPORA
Derek Ansel, Vice President, Therapeutic Strategy Lead, Rare DiseaseRare Disease, Worldwide Clinical Trials
Anjan Aralihalli, President & Founder, Raya Therapeutic, Inc.
Alexis Arzimanoglou, Coordinator of the European Reference Network for Rare and Complex Epilepsies, EpiCARE
Annette Bakker, CEO, Childrens Tumor Foundation
Fabienne Bartoli, Inspector General, French National Authority for Health
Debra Bellon, Strategic Engagement Manager, Rare Diseases International
Stefano Benvenuti, Head of Public Affairs and Market Access, Fondazione Telethon
Lara Bloom, President and CEO, The Ehlers-Danlos Society
Thomas Bols, Head of Government Affairs and Patient Advocacy, EMEA & APAC, PTC Therapeutics
Stine Bosse, MEP Renew Group Europe, European Parliament
Sara Brambilla, Global Programme Manager, Rare Diseases International
Thomas Broekhoff, Program Manager Medicines, hollandbio
P.J. Brooks, Deputy Director, Division of Rare Diseases Research Innovation, Member of IRDiRC Funders Constituent Committee (FCC), NIH/NCATS
Paul Broomhead, Head of Site, SGS Integrated CDMO Solutions
Anna Bucsics, Project Advisor, MoCA
Thomas Butt, Executive Director, Health Economics & Outcomes Research, Biomarin
Giorgia Crimi, Patient Adovacacy and engagement manager, Fondazione Telethon
Magdalena Daccord, Chief Executive Officer, FH Europe Foundation
Ria de Haas, CEO, FSHD Europe
Toon Digneffe, Head Public Affairs & Public Policy, Takeda
Elsie Evans, Ambassador Programme Project Manager, FH Europe Foundation NGO
Karen Facey, Chair HTAi Rare Disease Interest Group, University of Edinburgh
Peter Fassler, Director Market Access, Gilead Sciences
Pedro Franco, Senior Director, Head of Europe Global Regulatory & Scientific, Merck
Viviana Giannuzzi, Head of Research and Innovation Department, Fondazione per la ricerca farmacologica Gianni Benzi onlus
Josie Godfrey, Independent Market Access and Rare Disease Adviser, Independent Rare Disease Expert
Adrian Goretzki, President, Healthcare Education Institute
Alicia Granados, Global Head Scientific Advocacy and Insights, Sanofi
Marcus Guardian, CEO, International Horizon Scanning Initative
Niklas Hedberg, Head Of Pharmacy, Tandvards och Lakemedelsformansverket
Debbie Hellenbrand, Patient advocate and Professional Speaker, Pathways To Trust
Patrick Hopkinson, Independent HTA Expert, Independent HTA Expert
Mohit Jain, Vice President, Market Access & Pricing, Europe and International, Ascendis Pharma
Anneliene Jonker, Rare Disease Therapy Researcher, University of Twente
Ron Jortner, Founder & CEO, Aspire Biosciences
Daria Julkowska, Scientific Coordinator, ERDERA - INSERM
Iroda Jurabekova, Executive Director, Global Market Access, Oncology, Boehringer Ingelheim
Kaja Kantorska, Health and Food Safety Directorate General, European Commission
Manohar Katakam, Chief Executive Officer, SteroTherapeutics
Matthew Klein, Chief Executive Officer, PTC Therapeutics
Kristina Larsson, Head of Orphan Medicines, Division for Human Medicines Evidence Generation, EMA
Yann Le Cam, Advisor, VOZ Advisors
James Levine, President, Foundation Ipsen, James Levine - Ipsen
Caroline Ling, Vice President, Value & Access Europe, RTI Health Solutions
Veronica Lopez Gousset, DrPH candidate, Harvard T.H. Chan School of Public Health
Paolo Morgese, Vice President, Public Affairs, Europe, Alliance for Regenerative Medicine
Josephine Mosset, Senior Policy Officer, Cancer Patients Europe
Alexander Natz, Secretary General, EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
Frauke Naumann-Winter, Head of Unit, BfArM
Jonathan Neal, Head of Central, South and Eastern Europe Takeda and EFPIA European Markets Committee, Takeda
Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI
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
Sonia Pulido Sánchez, Co-Chair of the Subgroup for Joint Scientific Consultations of the HTACG, AEMPS
Tom Pulles, MD, VP, Head of Medical Affairs & Patient Advocacy, Europe, Acadia Pharmaceuticals Inc.
Asli Raman, Senior Technology Transfer and Business Development Manager, Institute for BioEngineering of Catalonia (IBEC)
Kit Roes, Professor, Radboudumc
Solange Roumengous, Head of partnerships, Banque Nationale de Données Maladies Rares (BNDMR) - Assistance Publique - Hôpitaux de Paris (APHP)
Christopher Rudolf, Founder & CEO, Volv Global
Mariem Sarghini, Founder, MSAQS
Maurizio Scarpa, Director, Coordinating Center For Rare Diseases, MetabERN
Ruchi Sharma, CEO, Stemnovate Limited
Lydia Shotton, Associate Director EU Government Affairs, Alliance for Regenerative Medicine
Claire Skentelbery, Director General, EuropaBio
Rachel Smith, Vice President, Rare and Genetic Diseases, Parexel International LLC
Violeta Stoyanova-Beninska, Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC, former Chair of COMP at EMA, EMA
Kwee Lan TAN, Head of team, Boehringer Ingelheim
Ishaan Tewarie, EQT Life Sciences
Sheela Upadhyaya, Life Science Advisor in Rare Diseases, Openflex Ltd
Evert Jan van Lente, management4health AG
Leon van Wouwe, Clinical Innovation Director, Volv Global
Miriam Wagner Long, Program lead, FSHD World Alliance
Anne Willemsen, Co-chair JCA Subgroup, Zorginstituut Nederland
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
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