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RAREsummit23 speakers

Over 50 key opinion leaders are took part in RS23 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 discussing Newborn Screening at Rarefest22

Lucy McKay

CEO, Medics4RareDiseases

Sophie Thomas

Sophie Thomas

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

Emma Davies Healx

Emma Davies

Associate Director Preclinial, Healx Ltd

Ilan Chaitowitz

Ilan Chaitowitz

Treasurer, CamRARE

Joanna Davidge

Joanna Davidge

Principal Business Manager, LifeArc

Sean Richardson

Sean Richardson

General Manager Alexion UK, AstraZeneca Rare Disease

Lamprini Kaftanzi

Dr. Lamprini Kaftanzi

Senior Advisor, EAHSN

Louise Jopling

Louise Jopling

Commercial Director, Eastern Academic Health Science Network

Sue Berry

Sue Berry

Trustee, CamRARE & Mum to rare child

Wendy Kane

Wendy Kane

Partner - Rare Disease, Roche

Cambridge Rare Disease Network - Fiona Marley 1

Fiona Marley

Head of Highly Specialised Commissioning, NHS England

William Griffiths

Professor William Griffiths

Swansea University

Naman Kochar

Naman Kochar

Senior Analyst, Costello Medical

Julia Carrasco Zanini Sanchez

Julia Carrasco Zanini Sanchez

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

Jill Harkin

Jill Harkin

Patient Advocacy, Sanofi

Matt Silver

Dr Matt Silver

Diverse Data, Genomics England

Mina Ryten

Professor Mina Ryten

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

Jamie Ellingford

Jamie Ellingford

Lead Genomic Data Scientist, Genomics England

Mary Bythall

Mary Bythell

Head of Rare Disease Registration, NHS Digital

Julia Kaut

Julia Kaut

Project Coordinator in Rare Diseases, Costello Medical

Karen Harrison

Karen Harrison

Support Services Manager, Alex TLC

Paul Selby

Paul Selby

Clinical Pharmacy Lead, East Genomics

Ritchie Head

Dr Ritchie Head

Director, Ceratium BV

Hannah Stark

Hannah Stark

Operations Lead, NIHR BioResource for Translational Research

Sheela Upadhyaya

Sheela Upadhyaya

Independent Rare Disease Consultant

Manfredi San Germano (1)

Manfredi San Germano

Director, Beyond Blood Diagnostics

Jason Colquitt

Jason Colquitt

Founder/CEO, Across Healthcare

Jignesh Barasara

Jignesh Barasara

CEO, Alpha MD & Liberate Pro Healthcare

Sam Milliken-Smith

Sam Milliken-Smith

Cofounder, Hibi

Cambridge Rare Disease Network - Kate Downes 2

Dr Kate Downes

Rare Disease Lead Scientist, East Genomics Laboratory Hub

Priya Viswanathan

Dr. Priya Viswanathan

Senior Research Collaboration Manager, co-ordinating centre, NIHR

Finn Willingham

Finn Willingham PhD

Head of ATTC Network Coordination, Cell and Gene Therapy Catapult

Sidharth Banka

Professor Siddharth Banka

Rare Conditions Centre Clinical Lead, University of Manchester

Giles Lomax

Giles Lomax

CEO, Spinal Muscular Atrophy UK

Matthew Hurles

Professor Matthew Hurles

Director the Wellcome Sanger Institute and Senior Group Leader

Loretta MacInnes

Loretta MacInnes

Founder, MacInnes Partnership

Darren Walsh

Darren Walsh

CEO, Orchard Therapeutics

Emma Green

Emma Green

Trustee, CamRARE

Richard Evans

Richard Evans

Programme Manager, UK Medical Research Council

Gemma Chandratillake

Dr Gemma Chandratillake

Chair, Cambridge Rare Disease Network

Nick Meade

Nick Meade

Director of Policy, Genetic Alliance UK

Cambridge Rare Disease Network - Dr Stephanie Efthymiou 3

Dr Stephanie Efthymiou

Postdoctoral Research Fellow, University College London

N Pontikos

Dr Nikolas Pontikos

Group Leader, Pontikos Lab, UCL Institute of Ophthalmology

David Rose

David Rose

Business Development Associate, Rare Revolution Magazine

A J Mcknight

Prof A J Mcknight

Professor, Queen's University Belfast

Nick Sireau

Dr Nick Sireau

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

Tom Staniford

Tom Staniford

Freelance Marketing Consultant & Lecturer

Amit Ghose

Amit Ghose

Motivational speaker & Coach

Jenny Gallop

Dr Jenny Gallop

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

Max Fisher

Max Fisher

Scientist 1, Revvity

Ellie Cornwell

Ellie Cornwell

Member of Unique Feet

Cambridge Rare Disease Network - Maxwell Mcknight 4

Maxwell Mcknight

Student, Anglia Ruskin University

Cambridge Rare Disease Network - Eric Omand Lewis 5

Eric Omand Lewis

Member of Unique Feet

Cambridge Rare Disease Network - Katrina Brooks 6

Katrina Brooks

Young Person Advocate