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
Derek Ansel, Vice President, Therapeutic Strategy Lead, Rare Disease, Worldwide Clinical Trials
Fabienne Bartoli, Inspector General, French National Authority for Health
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
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, PTC Therapeutics
Matt Bolz-Johnson, Mental Health Lead & Healthcare Advisor, EURORDIS
James Bonham, President, International Society for Neonatal Screening
P.J. Brooks, Acting Director, Division of Rare Diseases Research Innovation, NIH/NCATS
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
Elizabeth De Lange, Professor in Predictive Pharmacology, Leiden Amsterdam Center for Drug Research LACDR
Toon Digneffe, Head, Public Affairs & Public Policy, Europe & Canada, Takeda
João Duarte, Vice President, Head of Global Regulatory Affairs Excellence, Ipsen
Pauline Evers, Former NFK and Patient & Innovative therapies advoacate, NFK
Elise Evers, Senior Consultant, Initiate
Karen Facey, Senior Research Fellow, University of Edinburgh
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
Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals, Zorginstituut
Alicia Granados, Head, Global Rare Diseases Medical Scientific Advocacy, Sanofi
Marcus Guardian, CEO, International Horizon Scanning Initative
Niklas Hedberg, Head Of Pharmacy, Tandvards och Lakemedelsformansverket
Alexandra Heumber Perry, Chief Executive Officer, Rare Diseases International
Patrick Hopkinson, Managing Director, 'International HTA Expert
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 Coordination, European RD Research Alliance, IRDiRC
Nina Knight, Development & Operations Officer, Aspire Biosciences
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
Karen Malone, CEO, GeneScape
Aurora Mateos, Founder & Director, Menkes International Association
Michael Merchant, National Institute for Health and Care Excellence
Jan Mol, Patient Advocate, Hematon
Juliet Moritz, Senior VP Strategic Solutions and Patient Centricity, Ergomed
Alexander Natz, Secretary General, EUCOPE - European Confederation of Pharmaceutical Entrepreneurs
Jonathan Neal, Head Pipeline & Portfolio Europe & Canada, Takeda
Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI
Nneka Onwudiwe, Former PRO/PE Regulatory Review Officer, Food and Drug Administration (FDA)
Rachel Paiva Petean Abu Taleb, Medical Monitor, Veristat
Francesc Palau, Distinguished Investigator, SJD Barcelona Children's Hospital
Samantha Parker, Patient Advocacy and Communication Lead Rare Diseases, Italfarmaco
Bhavesh Patel, Principal, CRA, Charles River Associates
David Pearce, Chair, Sanford Health
Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group
Stefano Portolano, CEO, Azafaros
Shawn Ritchie, Chief Executive Officer, Med-Life Discoveries
Georgia Roberts, Senior Consultant HTA, Initiate
Christopher Rudolf, Founder and Chief Executive Officer, Volv Global
Adrien Samson, Healthcare policy senior manager, EuropaBio
Maurizio Scarpa, Director, Coordinating Center For Rare Diseases, MetabERN
Dieter Schultewolter, Teva Pharmaceuticals
Jörg Schüttrumpf, Chief Scientific Innovation Officer, Grifols
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
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
Sven Tops, Chief Market Access Officer, Kintiga
Sheela Upadhyaya, Life Science Advisor in Rare Diseases & Special Advisor, Openflex Ltd
Bart van Montfort, Scientific Director Biologics & Scientific Leader Gene Therapy, Johnson and Johnson
Leon van Wouwe, Clinical Innovation Director, Volv Global
Mary Wang, Global Programme Director, Rare Diseases International
Anne Willemsen, Co-chair JCA Subgroup, Zorginstituut Nederland
Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International
Martine Zimmermann, Senior Vice President, Head of Global Regulatory Affairs, Ipsen
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