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RAREsummit23 speakers

Over 40 key opinion leaders are taking part in panel discussions, fireside chats, leading workshops and live innovation pitching.

Learn more about their work, their thoughts on rare disease, and their hopes for the future of rare disease.

Lucy McKay

CEO, Medics4RareDiseases

Sophie Thomas

Senior Head of Patient Services and Clinical Liaisons, The MPS Society

Emma Davies

Associate Director Preclinial, Healx Ltd

Ilan Chaitowitz

Treasurer, CamRARE

Joanna Davidge

Principal Business Manager, LifeArc

Sean Richardson

General Manager Alexion UK, AstraZeneca Rare Disease

Dr. Lamprini Kaftanzi

Senior Advisor, EAHSN

Louise Jopling

Commercial Director, Eastern Academic Health Science Network

Sue Berry

Trustee, CamRARE & Mum to rare child

Wendy Kane

Partner - Rare Disease, Roche

Professor William Griffiths

Swansea University

Julia Carrasco Zanini Sanchez

Postdoctoral researcher, Precision Health University Institute (PHURI), Queen Mary University of London

Professor Mina Ryten

Professor of Clinical Genetics, UCL Great Ormond Street Institute of Child Health

Mary Bythell

Head of Rare Disease Registration, NHS Digital

Karen Harrison

Support Services Manager, Alex TLC

Dr Ritchie Head

Project Director, Ceratium

Hannah Stark

Operations Lead, NIHR BioResource for Translational Research

Sheela Upadhyaya

Independent Rare Disease Consultant

Cambridge Rare Disease Network - Kate Downes 1

Dr Kate Downes

Rare Disease Lead Scientist, East Genomics Laboratory Hub

Dr. Priya Viswanathan

Senior Research Collaboration Manager, co-ordinating centre, NIHR

Finn Willingham PhD

Head of ATTC Network Coordination, Cell and Gene Therapy Catapult

Professor Sidharth Banka

Rare Conditions Centre Clinical Lead, University of Manchester

Giles Lomax

CEO, Spinal Muscular Atrophy UK

Professor Matthew Hurles

Director the Wellcome Sanger Institute and Senior Group Leader

Loretta MacInnes

Founder, MacInnes Partnership

Darren Walsh

CEO, Orchard Therapeutics

Emma Green

Trustee, CamRARE

Richard Evans

Programme Manager, UK Medical Research Council

Dr Gemma Chandratillake

Chair, Cambridge Rare Disease Network

Nick Meade

Director of Policy, Genetic Alliance UK

Dr Stephanie Efthymiou

Postdoctoral Research Fellow, University College London

Dr Nikolas Pontikos

Group Leader, Pontikos Lab, UCL Institute of Ophthalmology

David Rose

Business Development Associate, Rare Revolution Magazine

Prof A J Mcknight

Professor, Queen's University Belfast

Dr Nick Sireau

Chair & CEO, AKU Society; Chair, Beacon for Rare Diseases

Tom Staniford

Freelance Marketing Consultant & Lecturer

Amit Ghose

Motivational speaker & Coach

Dr Jenny Gallop

Group Leader, Gurdon Institute & Department of Biochemistry, University of Cambridge

Max Fisher

Scientist 1, Revvity

Ellie Cornwell

Member of Unique Feet

Maxwell Mcknight

Student, Anglia Ruskin University

Eric Omand Lewis

Member of Unique Feet

Katrina Brooks

Young Person Advocate

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RAREsummit23 speakers

Over 40 key opinion leaders are taking part in panel discussions, fireside chats, leading workshops and live innovation pitching.

Learn more about their work, their thoughts on rare disease, and their hopes for the future of rare disease.

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