Contact CamRARE

Contact CamRARE

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.

Sam Milliken-Smith

Sam Milliken-Smith

Cofounder, Hibi

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Jignesh Barasara

Jignesh Barasara

CEO, Alpha MD & Liberate Pro Healthcare

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Jason Colquitt

Jason Colquitt

Founder/CEO, Across Healthcare

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Manfredi San Germano (1)

Manfredi San Germano

Director, Beyond Blood Diagnostics

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Paul Selby

Paul Selby

Clinical Pharmacy Lead, East Genomics

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Julia Kaut

Julia Kaut

Project Coordinator in Rare Diseases, Costello Medical

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Jamie Ellingford

Jamie Ellingford

Lead Genomic Data Scientist, Genomics England

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Matt Silver

Dr Matt Silver

Diverse Data, Genomics England

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Jill Harkin

Jill Harkin

Patient Advocacy, Sanofi

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Naman Kochar

Naman Kochar

Senior Analyst, Costello Medical

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Cambridge Rare Disease Network - Fiona Marley 1

Fiona Marley

Head of Highly Specialised Commissioning, NHS England

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Wendy Kane

Wendy Kane

Partner - Rare Disease, Roche

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Lamprini Kaftanzi

Dr. Lamprini Kaftanzi

Senior Advisor, EAHSN

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Ilan Chaitowitz

Ilan Chaitowitz

Treasurer, CamRARE

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Emma Davies Healx

Emma Davies

Associate Director Preclinial, Healx Ltd

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Loretta MacInnes

Loretta MacInnes

Founder, MacInnes Partnership

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Matthew Hurles

Professor Matthew Hurles

Director the Wellcome Sanger Institute and Senior Group Leader

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Giles Lomax

Giles Lomax

CEO, Spinal Muscular Atrophy UK

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Sidharth Banka

Professor Siddharth Banka

Rare Conditions Centre Clinical Lead, University of Manchester

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Finn Willingham

Finn Willingham PhD

Head of ATTC Network Coordination, Cell and Gene Therapy Catapult

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Priya Viswanathan

Dr. Priya Viswanathan

Senior Research Collaboration Manager, co-ordinating centre, NIHR

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Cambridge Rare Disease Network - Kate Downes 2

Dr Kate Downes

Rare Disease Lead Scientist, East Genomics Laboratory Hub

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Hannah Stark

Hannah Stark

Operations Lead, NIHR BioResource for Translational Research

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Ritchie Head

Dr Ritchie Head

Director, Ceratium BV

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Karen Harrison

Karen Harrison

Support Services Manager, Alex TLC

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Mary Bythall

Mary Bythell

Head of Rare Disease Registration, NHS Digital

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Mina Ryten

Professor Mina Ryten

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

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Julia Carrasco Zanini Sanchez

Julia Carrasco Zanini Sanchez

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

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William Griffiths

Professor William Griffiths

Swansea University

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Sue Berry

Sue Berry

Trustee, CamRARE & Mum to rare child

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Louise Jopling

Louise Jopling

Commercial Director, Eastern Academic Health Science Network

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Sean Richardson

Sean Richardson

General Manager Alexion UK, AstraZeneca Rare Disease

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Joanna Davidge

Joanna Davidge

Principal Business Manager, LifeArc

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Sophie Thomas

Sophie Thomas

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

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Lucy McKay discussing Newborn Screening at Rarefest22

Lucy McKay

CEO, Medics4RareDiseases

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Emma Green

Emma Green

Trustee, CamRARE

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Darren Walsh

Darren Walsh

CEO, Orchard Therapeutics

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A J Mcknight

Prof A J Mcknight

Professor, Queen's University Belfast

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David Rose

David Rose

Business Development Associate, Rare Revolution Magazine

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Tom Staniford

Tom Staniford

Freelance Marketing Consultant & Lecturer

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Amit Ghose

Amit Ghose

Motivational speaker & Coach

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Jenny Gallop

Dr Jenny Gallop

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

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Sheela Upadhyaya

Sheela Upadhyaya

Independent Rare Disease Consultant

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Nick Meade

Nick Meade

Director of Policy, Genetic Alliance UK

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N Pontikos

Dr Nikolas Pontikos

Group Leader, Pontikos Lab, UCL Institute of Ophthalmology

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Gemma Chandratillake

Dr Gemma Chandratillake

Chair, Cambridge Rare Disease Network

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Ellie Cornwell

Ellie Cornwell

Member of Unique Feet

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Richard Evans

Richard Evans

Programme Manager, UK Medical Research Council

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Max Fisher

Max Fisher

Scientist 1, Revvity

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Cambridge Rare Disease Network - Maxwell Mcknight 3

Maxwell Mcknight

Student, Anglia Ruskin University

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Cambridge Rare Disease Network - Eric Omand Lewis 4

Eric Omand Lewis

Member of Unique Feet

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Cambridge Rare Disease Network - Katrina Brooks 5

Katrina Brooks

Young Person Advocate

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Cambridge Rare Disease Network - Dr Stephanie Efthymiou 6

Dr Stephanie Efthymiou

Postdoctoral Research Fellow, University College London

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Nick Sireau

Dr Nick Sireau

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

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