2025 Speakers
27-29 October 2025
RAI Congress Center, Amsterdam
Nadiah Hanim Abdul Latif, President, Malaysian Rare Disorders Society
OMAR ALI, FORMER ADVISER NICE / HEAD OF PAYERS, VERPORA
Gabriella Almberg, Head of Health System Policy & Public Affairs, UCB
Alisha Angdembe, Senior Health Economist, Visible Analytics
Kim Angel, Executive Director, International MPS Network
Derek Ansel, Vice President, Therapeutic Strategy Lead, Rare Disease, Worldwide Clinical Trials
Annette Bakker, CEO, Childrens Tumor Foundation
Andy Barrick, CEO, Multiple System Atrophy Trust UK
Fabienne Bartoli, Inspector General, French National Authority for Health
Mark Battaglini, Chief Strategy Officer, Alliance for Regenerative Medicine
Gareth Baynam, Clinical Geneticist, Australian National University
Debra Bellon, Strategic Engagement Manager, Rare Diseases International
Stefano Benvenuti, Head of Public Affairs and Market Access, Fondazione Telethon
Juliane Bernholz, CEO, A.M. Pharma
Corinne Blanchet, Executive Director, Program Delivery, 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
James Bonham, President, International Society for Neonatal Screening
Angela Borghouts - de Ruijter, Associate Director Market Access, Gilead Sciences
Sara Brambilla, Global Programme Junior Manager, Rare Diseases International
Pascal Brokmeier, Head of Engineering, Every Cure
P.J. Brooks, Deputy Director, Division of Rare Diseases Research Innovation, NIH/NCATS
Virginie Bros-Facer, CEO, EURORDIS
Denis Broun, Director Givopax, Former Executive Director of UNTAID, World Health Organization, & Medical Director, Menkes International Association
Henriette Burghoorn, Associate Director, Market Access, Gilead Sciences
Antonella Cardone, CEO, Cancer Patients Europe
Beatriz Carmona-Hidalgo, Postdoctoral Researcher, Junta de Andalucía
Maria Cavaller Bellaubi, Patient Engagement and Therapeutic Development Director, EURORDIS
Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, Sanofi
William Cole, Life Science Partnership Manager, Kidney Research UK
Elly Darkin, Director, EUCAN Government Affairs & Policy, Rare Diseases, Alexion – AstraZeneca Rare Disease
Elizabeth De Lange, Professor in Predictive Pharmacology, Leiden Amsterdam Center for Drug Research LACDR
Daniele De Ritis, Researcher, San Raffaele Scientific Institute
Julien Delaye, Patient Engagement Manager – HTA, EURORDIS, EURORDIS
Toon Digneffe, Head, Public Affairs & Public Policy, Europe & Canada, Takeda
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.
Pauline Evers, Former NFK and Patient & Innovative therapies advoacate, NFK
Elise Evers, Senior Consultant, Initiate
Karen Facey, Senior Research Fellow, University of Edinburgh
Judith Fernandez, Deputy Director - HTA department, Haute Aurotité de santé (HAS)
Pedro Franco, Head of Europe Global Regulatory and Scientific Policy, Merck
Thom Frielink, Associate, Curie Capital BV
Almenia Garvey, Sr. Director Global Feasibility/Site Engagement, Allucent
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
Elena Godoy, Attending Pediatrician, Department of Pediatrics, Málaga Regional University Hospital
Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals, Zorginstituut
Adrian Goretzki, President, Healthcare Education Institute
Alicia Granados, Head, Global Rare Diseases Medical Scientific Advocacy, 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
Niklas Hedberg, Head Of Pharmacy, Tandvards och Lakemedelsformansverket
Carla Hollak, Professor Genetic Metabolic Diseases, Amsterdam UMC
Sebastian Honoré, Cure Lowe Foundation
Patrick Hopkinson, Independent HTA Expert, Independent HTA Expert
Anne Hugon, EU Project Manager, ERN ITHACA
Julian Isla, Director, Foundation 29
Mohit Jain, Vice President, Market Access, International Operations, IntraBio
Kirsten Johnson, Chair of Council RDI & Board Member, EURORDIS, EURORDIS
Anneliene Jonker, Rare Disease Therapy Researcher, University of Twente
Ron Jortner, Founder & CEO, Aspire Biosciences
Daria Julkowska, Scientific Coordinator, ERDERA - INSERM
Nina Knight, Development & Operations Officer, Aspire Biosciences
Jonathan Kornstein, VP, Rare Disease & Pediatrics Clinical Development, Caidya
Sarka Kubinova, Medical evaluator, MoCA coordinator, Czech Republic State Institute for Drug Control
Stelios Kympouropoulos, MEP, European Parliament
Christina Kyriakopoulou, Senior Expert - Policy Officer Health Research, European commission
Yann Le Cam, Founder & Past-CEO of EURORDIS-Rare Disease Europe, EURORDIS-Rare Diseases Europe
Tim Leest, Clinical Assessor Efficacy and Safety & Chair of COMP EMA, F.A.M.H.P
MI LIU, Professor, Soochow University
Veronica Lopez Gousset, Independent Consultant, VLG Consulting
Victor Maertens, Government Affairs Director, European Confederation of Pharmaceutical Entrepreneurs (Belgium)
Karen Malone, CEO, GeneScape
Francesca Maltecca, Group Leader, San Raffaele Scientific Institute
Milan Marinkov, Executive Medical Director, TA Medical Lead, Allucent
Aurora Mateos, Founder & Director, Menkes International Association
Drew Matheson, Executive Director. Franchise Area Lead Respiratory Medicine and Infectious Disease, Worldwide Clinical Trials
Aisling McMahon, Kidney Research UK
Michael Merchant, National Institute for Health and Care Excellence
Warnyta Minnaard, Patient advocate, Missie Tumor Onbekend
Federica Miotto, head of medical affairs, Fondazione Telethon
Peter Mol, UMCG - University Medical Center Groningen
Jan Mol, Patient Advocate, Hematon
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
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
James Oakley, CEO, Keep Me Breathing
Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI
Nneka Onwudiwe, Former PRO/PE Regulatory Review Officer, Food and Drug Administration (FDA)
Paula Orandash, Director, Patient Engagement, Ergomed
Juan Dario Ortigoza Escobar, Paediatric Neurologist Consultant, Hospital Sant Joan de Déu
Rachel Paiva Petean Abu Taleb, Medical Monitor, Veristat
Francesc Palau, Distinguished Investigator, SJD Barcelona Children's Hospital
Francis Pang, SVP Global Market Access and International Geographic Expansion, Orchard therapeutics
Samantha Parker, Patient Advocacy and Communication Lead Rare Diseases, Italfarmaco
Bhavesh Patel, Principal, CRA, Charles River Associates
David Pearce, Chair, International Rare Disease Research Consortium (IRDiRC), Sanford Health
Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group
Giulia Pierini, Partner, Strategic Patient Engagement & Advocacy, Alira Health
Carlos Pinoargote, Chief Operating Officer, BRCR Global
Stefano Portolano, CEO, Azafaros
Tom Pulles, MD, VP, Head of Medical Affairs & Patient Advocacy, Europe, Acadia Pharmaceuticals Inc.
Shawn Ritchie, Chief Executive Officer, Med-Life Discoveries
Georgia Roberts, Senior Consultant HTA, Initiate
Kent Rogers, CEO, EveryONE Medicines
Christopher Rudolf, Founder and Chief Executive Officer, Volv Global
Pierantonio Russo, FCCP, FAAP, STS, Corporate Chief Medical Officer, Eversana
Adrien Samson, Healthcare policy senior manager, EuropaBio
Cristobal Munoz Sanchez, Project management/RDIG projects coordinator, Junta de Andalucía
Maurizio Scarpa, Director, Coordinating Center For Rare Diseases, MetabERN
Dieter Schultewolter, Head of Global Medical Affairs Neuroscience, Teva Pharmaceuticals
Jörg Schüttrumpf, Chief Scientific Innovation Officer, Grifols
Diana Sinkevich, VP Market Access and HEOR, Chiesi
Claire Skentelbery, Director General, EuropaBio
Tara Smith, Exec VP, Innovative Therapies, Med-Life Discoveries
Rachel Smith, Executive Director, Global Head of Rare Disease, CoE, Parexel
Trevor Smith, VP Preclinical R&D, Inovio Pharmaceuticals
Alberta Spreafico, Senior Vice President, Health Innovation, Eversana
Violeta Stoyanova-Beninska, Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC, EMA
Kwee Lan Tan, Head of Team Regional Regulatory Lead, Boehringer Ingelheim
Ana Tediosi, Head of Expanded Access Program Strategy, WEP Clinical
Lonneke Timmers, strategic advisor, Zorginstituut Nederland / National Health Care Institute
Sven Tops, Chief Market Access Officer, Kintiga
Sophie H. Turner, Initiative Coordinator, Empowered By Us
Sheela Upadhyaya, Life Science Advisor in Rare Diseases & Special Advisor, Openflex Ltd
Silvia van der Flier, Medical Advisor, VGZ
Bart van Montfort, Scientific Director Biologics & Scientific Leader Gene Therapy, Johnson and Johnson
Leon van Wouwe, Clinical Innovation Director, Volv Global
Anne Willemsen, Co-chair JCA Subgroup, Zorginstituut Nederland
Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International
Wieteke Wouters, Programme Director, hollandbio
Martine Zimmermann, Senior Vice President, Head of Global Regulatory Affairs, IPSEN
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