2025 Speakers

 

27-29 October 2025
RAI Congress Center, Amsterdam

 

 

Nadiah Hanim Abdul Latif, President, Malaysian Rare Disorders Society

Nadiah Hanim Abdul Latif | President | Malaysian Rare Disorders Society » speaking at Orphan Drug Congress

OMAR ALI, FORMER ADVISER NICE / HEAD OF PAYERS, VERPORA

Gabriella Almberg, Head of Health System Policy & Public Affairs, UCB

Gabriella Almberg | Head of Health System Policy & Public Affairs | UCB » speaking at Orphan Drug Congress

Kim Angel, Executive Director, International MPS Network

Kim Angel | Executive Director | International MPS Network » speaking at Orphan Drug Congress

Derek Ansel, Vice President, Therapeutic Strategy Lead, Rare Disease, Worldwide Clinical Trials

Derek Ansel | Vice President, Therapeutic Strategy Lead, Rare Disease | Worldwide Clinical Trials » speaking at Orphan Drug Congress

Annette Bakker, CEO, Childrens Tumor Foundation

Annette Bakker | CEO | Childrens Tumor Foundation » speaking at Orphan Drug Congress

Andy Barrick, CEO, Multiple System Atrophy Trust UK

Andy Barrick | CEO | Multiple System Atrophy Trust UK » speaking at Orphan Drug Congress

Fabienne Bartoli, Inspector General, French National Authority for Health

Fabienne Bartoli | Inspector General | French National Authority for Health » speaking at Orphan Drug Congress

Mark Battaglini, Chief Strategy Officer, Alliance for Regenerative Medicine

Mark Battaglini | Chief Strategy Officer | Alliance for Regenerative Medicine » speaking at Orphan Drug Congress

Gareth Baynam, Clinical Geneticist, Australian National University

Gareth Baynam | Clinical Geneticist | Australian National University » speaking at Orphan Drug Congress

Debra Bellon, Strategic Engagement Manager, Rare Diseases International

Debra Bellon | Strategic Engagement Manager | Rare Diseases International » speaking at Orphan Drug Congress

Stefano Benvenuti, Head of Public Affairs and Market Access, Fondazione Telethon

Stefano Benvenuti | Head of Public Affairs and Market Access | Fondazione Telethon » speaking at Orphan Drug Congress

Juliane Bernholz, Chief Operating Officer, A.M. Pharma

Juliane Bernholz | Chief Operating Officer | A.M. Pharma » speaking at Orphan Drug Congress

Corinne Blanchet, Executive Director, Program Delivery, Premier Research

Corinne Blanchet | Executive Director, Program Delivery | Premier Research » speaking at Orphan Drug Congress

LARA BLOOM, President and CEO, The Ehlers-Danlos Society

LARA BLOOM | President and CEO | The Ehlers-Danlos Society » speaking at Orphan Drug Congress

Thomas Bols, Head of Government Affairs and Patient Advocacy, EMEA & APAC, PTC Therapeutics

Thomas Bols | Head of Government Affairs and Patient Advocacy, EMEA & APAC | PTC Therapeutics » speaking at Orphan Drug Congress

Matt Bolz-Johnson, Mental Health Lead & Healthcare Advisor, EURORDIS

Matt Bolz-Johnson | Mental Health Lead & Healthcare Advisor | EURORDIS » speaking at Orphan Drug Congress

James Bonham, President, International Society for Neonatal Screening

James Bonham | President | International Society for Neonatal Screening » speaking at Orphan Drug Congress

Angela Borghouts - de Ruijter, Associate Director Market Access, Gilead Sciences

Angela Borghouts - de Ruijter | Associate Director Market Access | Gilead Sciences » speaking at Orphan Drug Congress

P.J. Brooks, Deputy Director, Division of Rare Diseases Research Innovation, NIH/NCATS

P.J. Brooks | Deputy Director, Division of Rare Diseases Research Innovation | NIH/NCATS » speaking at Orphan Drug Congress

Virginie Bros-Facer, CEO, EURORDIS

Virginie Bros-Facer | CEO | EURORDIS » speaking at Orphan Drug Congress

Denis Broun, Director Givopax, Former Executive Director of UNTAID, World Health Organization, & Medical Director, Menkes International Association

Denis Broun | Director Givopax, Former Executive Director of UNTAID, World Health Organization, & Medical Director | Menkes International Association » speaking at Orphan Drug Congress

Beatriz Carmona-Hidalgo, Postdoctoral Researcher, Junta de Andalucía

Beatriz Carmona-Hidalgo | Postdoctoral Researcher | Junta de Andalucía » speaking at Orphan Drug Congress

Maria Cavaller Bellaubi, Patient Engagement and Therapeutic Development Director, EURORDIS

Maria Cavaller Bellaubi | Patient Engagement and Therapeutic Development Director | EURORDIS » speaking at Orphan Drug Congress

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, Sanofi

Anne-Sophie Chalandon | Head of Global Public Affairs, Rare Diseases and CGT Policies | Sanofi » speaking at Orphan Drug Congress

William Cole, Life Science Partnership Manager, Kidney Research UK

Elizabeth De Lange, Professor in Predictive Pharmacology, Leiden Amsterdam Center for Drug Research LACDR

Daniele De Ritis, Researcher, San Raffaele Scientific Institute

Daniele De Ritis | Researcher | San Raffaele Scientific Institute » speaking at Orphan Drug Congress

Julien Delaye, Patient Engagement Manager – HTA, EURORDIS, EURORDIS

Julien Delaye | Patient Engagement Manager – HTA, EURORDIS | EURORDIS » speaking at Orphan Drug Congress

Toon Digneffe, Head, Public Affairs & Public Policy, Europe & Canada, Takeda

João Duarte, Vice President, Head of Global Regulatory Affairs Excellence, IPSEN

João Duarte | Vice President, Head of Global Regulatory Affairs Excellence | IPSEN » speaking at Orphan Drug Congress

Pauline Evers, Former NFK and Patient & Innovative therapies advoacate, NFK

Pauline Evers | Former NFK and Patient & Innovative therapies advoacate | NFK » speaking at Orphan Drug Congress

Elise Evers, Senior Consultant, Initiate

Elise Evers | Senior Consultant | Initiate » speaking at Orphan Drug Congress

Karen Facey, Senior Research Fellow, University of Edinburgh

Karen Facey | Senior Research Fellow | University of Edinburgh » speaking at Orphan Drug Congress

Judith Fernandez, Deputy Director - HTA department, Haute Aurotité de santé (HAS)

Judith Fernandez | Deputy Director - HTA department | Haute Aurotité de santé (HAS) » speaking at Orphan Drug Congress

Pedro Franco, Head of Europe Global Regulatory and Scientific Policy, Merck

Pedro Franco | Head of Europe Global Regulatory and Scientific Policy | Merck » speaking at Orphan Drug Congress

Thom Frielink, Associate, Curie Capital BV

Thom Frielink | Associate | Curie Capital BV » speaking at Orphan Drug Congress

Almenia Garvey, Sr. Director Global Feasibility/Site Engagement, Allucent

Almenia Garvey | Sr. Director Global Feasibility/Site Engagement | Allucent » speaking at Orphan Drug Congress

Diego Fernando Gil Cardozo, President, Enfermedades Raras en el Caribe y América Latina (ERCAL)

Sonia Gobeil, Cofounder, Ataxia of Charlevoix-Saguenay Foundation

Sonia Gobeil | Cofounder | Ataxia of Charlevoix-Saguenay Foundation » speaking at Orphan Drug Congress

Josie Godfrey, Director, JG Zebra Consulting

Josie Godfrey | Director | JG Zebra Consulting » speaking at Orphan Drug Congress

Elena Godoy, Attending Pediatrician, Department of Pediatrics, Málaga Regional University Hospital

Elena Godoy | Attending Pediatrician, Department of Pediatrics | Málaga Regional University Hospital » speaking at Orphan Drug Congress

Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals, Zorginstituut

Wim Goettsch | Special Advisor HTA & Professor for HTA of Pharmaceuticals | Zorginstituut » speaking at Orphan Drug Congress

Alicia Granados, Head, Global Rare Diseases Medical Scientific Advocacy, Sanofi

Alicia Granados | Head, Global Rare Diseases  Medical Scientific Advocacy | Sanofi » speaking at Orphan Drug Congress

Anabel Granja Dominguez, Researcher, Junta de Andalucía

Anabel Granja Dominguez | Researcher | Junta de Andalucía » speaking at Orphan Drug Congress

Chris Grimes-Crompton, Principal Consultant, DECISIVE CONSULTING LTD

Marcus Guardian, CEO, International Horizon Scanning Initative

Marcus Guardian | CEO | International Horizon Scanning Initative » speaking at Orphan Drug Congress

Niklas Hedberg, Head Of Pharmacy, Tandvards och Lakemedelsformansverket

Niklas Hedberg | Head Of Pharmacy | Tandvards och Lakemedelsformansverket » speaking at Orphan Drug Congress

Carla Hollak, internist, Amsterdam UMC

Sebastian Honoré, Cure Lowe Foundation

Sebastian Honoré |  | Cure Lowe Foundation » speaking at Orphan Drug Congress

Patrick Hopkinson, Managing Director, 'International HTA Expert

Julian Isla, Director, Foundation 29

Julian Isla | Director | Foundation 29 » speaking at Orphan Drug Congress

Mohit Jain, Vice President, Market Access, International Operations, IntraBio

Mohit Jain | Vice President, Market Access, International Operations | IntraBio » speaking at Orphan Drug Congress

Kirsten Johnson, Chair of Council RDI & Board Member, EURORDIS, EURORDIS

Kirsten Johnson | Chair of Council RDI & Board Member, EURORDIS | EURORDIS » speaking at Orphan Drug Congress

Anneliene Jonker, Rare Disease Therapy Researcher, University of Twente

Anneliene Jonker | Rare Disease Therapy Researcher | University of Twente » speaking at Orphan Drug Congress

Ron Jortner, Founder & CEO, Aspire Biosciences

Ron Jortner | Founder & CEO | Aspire Biosciences » speaking at Orphan Drug Congress

Daria Julkowska, Scientific Coordination, European RD Research Alliance, IRDiRC

Daria Julkowska | Scientific Coordination, European RD Research Alliance | IRDiRC » speaking at Orphan Drug Congress

Nina Knight, Development & Operations Officer, Aspire Biosciences

Nina Knight | Development & Operations Officer | Aspire Biosciences » speaking at Orphan Drug Congress

Jonathan Kornstein, VP, Rare Disease & Pediatrics Clinical Development, Caidya

Jonathan Kornstein | VP,  Rare Disease & Pediatrics Clinical Development | Caidya » speaking at Orphan Drug Congress

Sarka Kubinova, Medical evaluator, MoCA coordinator, Czech Republic State Institute for Drug Control

Sarka Kubinova | Medical evaluator, MoCA coordinator | Czech Republic State Institute for Drug Control » speaking at Orphan Drug Congress

Stelios Kympouropoulos, MEP, European Parliament

Stelios Kympouropoulos | MEP | European Parliament » speaking at Orphan Drug Congress

Christina Kyriakopoulou, Senior Expert - Policy Officer Health Research, European commission

Christina Kyriakopoulou | Senior Expert - Policy Officer Health Research | European commission » speaking at Orphan Drug Congress

Yann Le Cam, Founder & Past-CEO of EURORDIS-Rare Disease Europe, EURORDIS-Rare Diseases Europe

Yann Le Cam | Founder & Past-CEO of EURORDIS-Rare Disease Europe | EURORDIS-Rare Diseases Europe » speaking at Orphan Drug Congress

Tim Leest, Clinical Assessor Efficacy and Safety & Chair of COMP EMA, F.A.M.H.P

Tim Leest | Clinical Assessor Efficacy and Safety & Chair of COMP EMA | F.A.M.H.P » speaking at Orphan Drug Congress

MI LIU, Professor, Soochow University

Veronica Lopez Gousset, Independent Consultant, VLG Consulting

Veronica Lopez Gousset | Independent Consultant | VLG Consulting » speaking at Orphan Drug Congress

Victor Maertens, Government Affairs Director, European Confederation of Pharmaceutical Entrepreneurs (Belgium)

Victor Maertens | Government Affairs Director | European Confederation of Pharmaceutical Entrepreneurs (Belgium) » speaking at Orphan Drug Congress

Karen Malone, CEO, GeneScape

Karen Malone | CEO | GeneScape » speaking at Orphan Drug Congress

Francesca Maltecca, Group Leader, San Raffaele Scientific Institute

Francesca Maltecca | Group Leader | San Raffaele Scientific Institute » speaking at Orphan Drug Congress

Aurora Mateos, Founder & Director, Menkes International Association

Drew Matheson, Executive Director. Franchise Area Lead Respiratory Medicine and Infectious Disease, Worldwide Clinical Trials

Drew Matheson | Executive Director. Franchise Area Lead Respiratory Medicine and Infectious Disease | Worldwide Clinical Trials » speaking at Orphan Drug Congress

Aisling McMahon, Kidney Research UK

Aisling McMahon |  | Kidney Research UK » speaking at Orphan Drug Congress

Michael Merchant, National Institute for Health and Care Excellence

Michael Merchant |  | National Institute for Health and Care Excellence » speaking at Orphan Drug Congress

Warnyta Minnaard, Patient advocate, Missie Tumor Onbekend

Federica Miotto, head of medical affairs, Fondazione Telethon

Federica Miotto | head of medical affairs | Fondazione Telethon » speaking at Orphan Drug Congress

Peter Mol, UMCG - University Medical Center Groningen

Peter Mol |  | UMCG - University Medical Center Groningen » speaking at Orphan Drug Congress

Jan Mol, Patient Advocate, Hematon

Paolo Morgese, Vice President, Public Affairs, Europe, Alliance for Regenerative Medicine

Paolo Morgese | Vice President, Public Affairs, Europe | Alliance for Regenerative Medicine » speaking at Orphan Drug Congress

Juliet Moritz, Senior VP Strategic Solutions and Patient Centricity, Ergomed

Juliet Moritz | Senior VP Strategic Solutions and Patient Centricity | Ergomed » speaking at Orphan Drug Congress

Alexander Natz, Secretary General, EUCOPE - European Confederation of Pharmaceutical Entrepreneurs

Alexander Natz | Secretary General | EUCOPE - European Confederation of Pharmaceutical Entrepreneurs » speaking at Orphan Drug Congress

Frauke Naumann-Winter, Head of Unit, BfArM

Frauke Naumann-Winter | Head of Unit | BfArM » speaking at Orphan Drug Congress

Jonathan Neal, Head of Central, South and Eastern Europe Takeda and EFPIA European Markets Committee, Takeda

Jonathan Neal | Head of Central, South and Eastern Europe Takeda and EFPIA European Markets Committee | Takeda » speaking at Orphan Drug Congress

James Oakley, CEO, Keep Me Breathing

James Oakley | CEO | Keep Me Breathing » speaking at Orphan Drug Congress

Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI

Daniel O'Connor | Director, Regulatory Policy & Early Access | ABPI » speaking at Orphan Drug Congress

Nneka Onwudiwe, Former PRO/PE Regulatory Review Officer, Food and Drug Administration (FDA)

Nneka Onwudiwe | Former PRO/PE Regulatory Review Officer | Food and Drug Administration (FDA) » speaking at Orphan Drug Congress

Paula Orandash, Director, Patient Engagement, Ergomed

Paula Orandash | Director, Patient Engagement | Ergomed » speaking at Orphan Drug Congress

Juan Dario Ortigoza Escobar, Paediatric Neurologist Consultant, Hospital Sant Joan de Déu

Juan Dario Ortigoza Escobar | Paediatric Neurologist Consultant | Hospital Sant Joan de Déu » speaking at Orphan Drug Congress

Rachel Paiva Petean Abu Taleb, Medical Monitor, Veristat

Rachel Paiva Petean Abu Taleb | Medical Monitor | Veristat » speaking at Orphan Drug Congress

Francesc Palau, Distinguished Investigator, SJD Barcelona Children's Hospital

Samantha Parker, Patient Advocacy and Communication Lead Rare Diseases, Italfarmaco

Samantha Parker | Patient Advocacy and Communication Lead Rare Diseases | Italfarmaco » speaking at Orphan Drug Congress

Bhavesh Patel, Principal, CRA, Charles River Associates

Bhavesh Patel | Principal | CRA, Charles River Associates » speaking at Orphan Drug Congress

David Pearce, Chair, International Rare Disease Research Consortium (IRDiRC), Sanford Health

David Pearce | Chair, International Rare Disease Research Consortium (IRDiRC) | Sanford Health » speaking at Orphan Drug Congress

Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group

Enrico Piccinini | Senior Vice President, EU & International, Rare Diseases | Chiesi Group » speaking at Orphan Drug Congress

Giulia Pierini, Partner, Strategic Patient Engagement & Advocacy, Alira Health

Carlos Pinoargote, Chief Operating Officer, BRCR Global

Carlos Pinoargote | Chief Operating Officer | BRCR Global » speaking at Orphan Drug Congress

Stefano Portolano, CEO, Azafaros

Stefano Portolano | CEO | Azafaros » speaking at Orphan Drug Congress

Tom Pulles, MD, VP, Head of Medical Affairs & Patient Advocacy, Europe, Acadia Pharmaceuticals Inc.

Tom Pulles, MD | VP, Head of Medical Affairs & Patient Advocacy, Europe | Acadia Pharmaceuticals Inc. » speaking at Orphan Drug Congress

Shawn Ritchie, Chief Executive Officer, Med-Life Discoveries

Georgia Roberts, Senior Consultant HTA, Initiate

Georgia Roberts | Senior Consultant HTA | Initiate » speaking at Orphan Drug Congress

Kent Rogers, CEO, EveryONE Medicines

Christopher Rudolf, Founder and Chief Executive Officer, Volv Global

Christopher Rudolf | Founder and Chief Executive Officer | Volv Global » speaking at Orphan Drug Congress

Pierantonio Russo, FCCP, FAAP, STS, Corporate Chief Medical Officer, EVERSANA

Pierantonio Russo, FCCP, FAAP, STS | Corporate Chief Medical Officer | EVERSANA » speaking at Orphan Drug Congress

Adrien Samson, Healthcare policy senior manager, EuropaBio

Adrien Samson | Healthcare policy senior manager | EuropaBio » speaking at Orphan Drug Congress

Maurizio Scarpa, Director, Coordinating Center For Rare Diseases, MetabERN

Maurizio Scarpa | Director, Coordinating Center For Rare Diseases | MetabERN » speaking at Orphan Drug Congress

Dieter Schultewolter, Head of Global Medical Affairs Neuroscience, Teva Pharmaceuticals

Dieter Schultewolter | Head of Global Medical Affairs Neuroscience | Teva Pharmaceuticals » speaking at Orphan Drug Congress

Jörg Schüttrumpf, Chief Scientific Innovation Officer, Grifols

Claire Skentelbery, Director General, EuropaBio

Claire Skentelbery | Director General | EuropaBio » speaking at Orphan Drug Congress

Tara Smith, Exec VP, Innovative Therapies, Med-Life Discoveries

Rachel Smith, Executive Director, Global Head of Rare Disease, CoE, Parexel

Rachel Smith | Executive Director, Global Head of Rare Disease, CoE | Parexel » speaking at Orphan Drug Congress

Trevor Smith, VP Preclinical R&D, Inovio Pharmaceuticals

Trevor Smith | VP Preclinical R&D | Inovio Pharmaceuticals » speaking at Orphan Drug Congress

Alberta Spreafico, Senior Vice President, Health Innovation, EVERSANA

Alberta Spreafico | Senior Vice President, Health Innovation | EVERSANA » speaking at Orphan Drug Congress

Violeta Stoyanova-Beninska, Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC, EMA

Violeta Stoyanova-Beninska | Senior Scientific Specialist at Human Division EMA, Chair of Regulatory Science Committee, IRDiRC | EMA » speaking at Orphan Drug Congress

Kwee Lan Tan, Head of Team Regional Regulatory Lead, Boehringer Ingelheim

Ana Tediosi, Head of Expanded Access Program Strategy, WEP Clinical

Ana Tediosi | Head of Expanded Access Program Strategy | WEP Clinical » speaking at Orphan Drug Congress

Sven Tops, Chief Market Access Officer, Kintiga

Sven Tops | Chief Market Access Officer | Kintiga » speaking at Orphan Drug Congress

Sheela Upadhyaya, Life Science Advisor in Rare Diseases & Special Advisor, Openflex Ltd

Sheela Upadhyaya | Life Science Advisor in Rare Diseases & Special Advisor | Openflex Ltd » speaking at Orphan Drug Congress

Bart van Montfort, Scientific Director Biologics & Scientific Leader Gene Therapy, Johnson and Johnson

Bart van Montfort | Scientific Director Biologics & Scientific Leader Gene Therapy | Johnson and Johnson » speaking at Orphan Drug Congress

Leon van Wouwe, Clinical Innovation Director, Volv Global

Leon van Wouwe | Clinical Innovation Director | Volv Global » speaking at Orphan Drug Congress

Anne Willemsen, Co-chair JCA Subgroup, Zorginstituut Nederland

Anne Willemsen | Co-chair JCA Subgroup | Zorginstituut Nederland » speaking at Orphan Drug Congress

Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International

Durhane Wong-Rieger | President, Chief Executive Officer | Canadian Organisation for Rare Disorder & Rare Diseases International » speaking at Orphan Drug Congress

Martine Zimmermann, Senior Vice President, Head of Global Regulatory Affairs, IPSEN

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