23rd Orphan Drugs and Rare Diseases Global Congress 2025 Europe
Addressing the challenges in drug development, treatment availability, and access.
Copthorne Tara Hotel London Kensington, London, UK, London, United Kingdom
Wednesday 19th - Thursday 20th March 2025
KEY INDUSTRY EXPERT SPEAKERS
- Prof James LEVINE MD PhD, President, Fondation Ipsen
- Enrico Piccinini, Head of Europe & International, Rare Diseases, Chiesi Group
- Dr Peter Davis, Chair, BPSU, Scientific Committee, Bristol Royal Hospital for Children
- Amanda Bok, Chief Partnership Officer, The Synergist
- Alberto Malerba, Lead, Gene Medicine Laboratory for Rare Diseases, Royal Holloway University
- Sue Verma, Chief Medical Officer, Leadiant Biosciences
- Prof Guillaume Canaud, Translational Medicine & Targeted Therapies Unit, Necker Enfants Malades
- Lindsay Randall, Mother, Founder, CEO, Arthur’s Quest
- Dr. Femida Gwadry-Sridhar, Founder and CEO, Pulse infoframe Inc.
- Dan Lewi, Head of Business Development and Patient Advocacy , Pulse infoframe Inc.
- Sheela Upadhyaya, Chair Elect, Rare Disease Special Interest Group, ISPOR
- Carole Scrafton, Director & Co-Founder, Flutters and Strutters
- Josie Godfrey, Co-Founder and CEO, Realise Advocacy
- Lindsay Birrell, Co-CEO, Realise Advocacy
- Cpt. Luke Rosen, Founder, Rescue7: Firefighters for Patients, and KIF1A.ORG.
- Anna Kole, Global Patient Engagement Lead - MG, UCB
- Robert Mitchell-Thain, CEO, PBC Foundation
- Dr Pooja Takhar, Joint Chief Executive, Tuberous Sclerosis Association
- Daniel O’Connor, Director, Regulatory Policy and Early Access, ABPI
- Francis Pang, SVP Global Market Access and Geographic Expansion, Orchard Therapeutics
- Dr. Rüdiger Schulze, Vice President and General Manager, DACH, Ultragenyx
- Stefano Benvenuti, Head of Public Affairs and Market Access, Fondazione Telethon
- Anthony Hall, Co-Founder, Member of Board & Scientific Advisor, Beacon for Rare Diseases
- Usman Khan, Chair, Motor Neurone Disease (MND) Association
- Flaminia Macchia, Head, Global Rare Disease Policy, AstraZeneca
- Alicia Granados, Global Head Scientific Advocacy & Insights, Rare Diseases, Sanofi
- Manel Cascallo, General Director, Theriva Biologics Inc
- Dr Lucy McKay, Chief Executive Officer, Medics4RareDiseases
- Alexander Natz, Secretary General, EUCOPE
- Jennifer Schranz, SVP, Global Head of Rare Diseases, Ipsen
- Bob Stevens, Group CEO, MPS Society, Vice Chair, LSD Collaborative
- Stacey Minton, SVP, Head of Corporate Affairs, Kyowa Kirin International
- Matt Johnson, Mental Health Lead & Healthcare Advisor, EURORDIS
- Kirsten Johnson, Chair of the Council, Rare Diseases International
- Mary Wang, Global Programme Director, Rare Diseases International
- Dr. Rick Thompson, CEO, Beacon: for rare diseases
- Dante DI IULIO, Public Affairs Lead, Europe & International, RARE, Chiesi

Prof James LEVINE
President

SURABHI VERMA
Chief Medical Officer

Amanda Bok
Chief Partnership Officer,

Sheela Upadhyaya
Chair Elect, Rare Disease Special Interest Group

DAN LEWI
Head of Business Development and Patient Advocacy
Pulse infoframe Inc., Co- founder, CATS Foundation

DAN LEWI
Head of Business Development and Patient Advocacy

Sophie H. Turner
Initiative Coordinator

Prof Guillaume Canaud
Translational Medicine & Targeted Therapies Unit

Dr Alberto Malerba
Lecturer in Gene therapy, Gene Medicine Laboratory for Rare Diseases –
Malerba Research Group, Department of Biological Sciences Royal Holloway, University of London

Dr Alberto Malerba
Lecturer in Gene therapy, Gene Medicine Laboratory for Rare Diseases –

Dr Peter Davis
Chair

Dr. Femida Gwadry-Sridhar
Founder and CEO

Alexander Natz
Secretary General

CAROLE SCRAFTON
Director & Co-Founder

Cpt. Luke Rosen
Founder

DR USMAN KHAN
Chair

Bob Stevens
Group CEO, MPS Society, Vice Chair

DR POOJA TAKHAR
Joint Chief Executive

DR. RÜDIGER SCHULZE
Vice President and General Manager

ROBERT MITCHELL-THAIN
CEO

ANTHONY HALL
Co-Founder, Member of Board & Scientific Advisor

STEFANO BENVENUTI
Head of Public Affairs and Market Access

DR LUCY MCKAY
Chief Executive Officer

JENNIFER SCHRANZ
Senior Vice President and Global Head of Rare Diseases, R&D

Manel Cascalló
General Director EU Subsidiary & Founder

Dante Di Iulio
Public Affairs Lead

Dr Chiuhui Mary Wang
Global Programme Director

Dr Kirsten Johnson
Chair of the Council

Stacey Minton
SVP, Head of Corporate Affairs