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World Orphan Drug Congress 2024
22 - 25 October
Fira de Barcelona Montjuic,
Barcelona
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Advisory Board
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Yann Le Cam
CEO
EURORDIS
Daniel O’Connor
Expert Medical Assessor in Licensing Division
Medicines and Healthcare Products Regulatory Agency
Rick Thompson
CEO
Beacon
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
Toon Digneffe
Head Public Affairs & Public Policy
Takeda
Sheela Upadhyaya
Life Science Advisor in Rare Diseases & Special Advisor
FIPRA
Charlotte Chanson
Director, Global Diagnostics & Newborn Screening
Orchard Therapuetics
Josie Godfrey
Former Associate Director of NICE
Rare Disease, Market Access, JG Zebra Consulting
Anna Bucsics
Project Advisor
MoCA
Dr Alexander Natz
Secretary General
EUCOPE
Dr Diego Ardigo
IRDiRC Chair & R&D Rare Diseases Unit Head
Chiesi Group
Samantha Parker
IRDiRC Co-Chair
Patient Advocacy and Communication Lead Rare Diseases Europe, Italfarmaco
Wills Hughes-Wilson
Head of Patient Access & Commercial Planning
Mereo BioPharma
Anne-Sophie Chalandon
Head of Global Affairs, Rare Diseases & CGT Policy Speciality Care
Sanofi
Marcus Guardian
General Manager
International Horizon Scanning Initiative
Martine Zimmermann
Senior Vice President, Head of Regulatory Affairs, R&D Quality
Ipsen
Karen Facey
Senior Research Fellow
University of Edinburgh
Dr Violeta Stoyanova-Beninska
Chair of Committee for Orphan Medicinal Products, EMA
Policy, Regulatory and International Affairs, CBG -MEB
Fabienne Bartoli
Inspector General for Social Affairs
French Ministry of Health
Dr Soraya Bekkali
Senior Vice President, International Commerical Operations
Alexion, AstraZeneca Rare Diseases
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