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RAREfest20 speakers

Learn more about the RAREfest20 speakers, some of the brightest minds in research, creators of life-changing technology and powerful patient voices which need to be heard.

RAREfest saturday speaker Giles Yeo


Principal research associate, MRC Institute of Metabolic Science, author, BBC presenter

Melita Irving

Dr Melita Irving –

Consultant, Clinical Genetics, Guy’s and St Thomas’ NHS Trust, author

Adam Pearson

Adam Pearson –

Actor, presenter, speaker, owner of a rare disease and disability rights campaigner

Dana Cookies for Cures RAREfest20


Founder, Cookies4Cures, raising funds for rare disease research one cookie at a time

Onno Faber

Onno Faber –

Entrepreneur, public speaker, rare disease patient, Co-founder & CEO of Rarebase

Lucy McKay

Dr Lucy McKay –

Founder and CEO, Medics4RareDiseases, trained doctor

Bobby Gaspar RAREfest20

Prof Bobby Gaspar –

CEO, Orchard Therapeutics, a pioneer in gene therapy, UCL,  GOSH Institute of Child Health

Kat Arney

Dr Kat Arney –

Science writer, broadcaster, public speaker. Founder, First Create The Media

Prof Stefan Marciniak

Prof Stefan Marciniak

Prof of Respiratory Science, Cambridge Institute for Medical Research (CIMR)

Maria Picone TREND Community RAREfest20

Maria Picone –

Caregiver, Co-Founder and CEO, TREND Community, USA based

Graham Miller Really Real Resources RAREfest20

Graham Miller –

Documentary photographer, founder of Really Real Resources 

Dr Jenny Dickens

DR Jenny Dickens –

Clinician scientist, respiratory consultant, Addenbrooke’s, Royal Papworth, CIMR

Rudy Benfredj

Rudy Benfredj –

Co-founder and CEO, Mendelian 

Shirlene Badger

Shirlene Badger –

Patient Advocacy Specialist, Illumina

Ceri Hughes

Ceridwen Hughes –

Photographer, Art Director, Same But Different

Dr Jason Mellad

Dr Jason Mellad –

Co-founder and CEO of Start Cordon

Jordan Mossom

Jordan Mossom –

Documentary photographer, living with Duchenne Muscular dystrophy

Prof Tim Cox

Tom Almeroth – Williams

Communications  Manager, Uni of Cambridge,  rare disease dad

Ross Lannon

Ross Lannon –

Blogger (A Life on Wheels), living with Spinal Muscular Atrophy

Georgina morton Archangel MLD Trust RAREfest20

Georgia Hart –

Youth Ambassador (teens), Rare Revolution Youth, living with Friedreich’s Ataxia

Graham Miller Photohonesty RAREfest20

Eddison Miller –

Rare Revolution Youth, living with Xeroderma Pigmentosum 

Nikita CIMR

  Nikita Zubkov –

Research Assistant,  Cambridge Institute of   Medical Research

Dagmar bennett

Dagmar Bennett –

Sculptor & Creative Producer, Fellow Royal Society of Arts

Simone Manso

Simone Manso –

Head Neurofibromatosis Strategic Partnerships, Healx

Eimear Rutherford

Eimear Rutherford –

PhD student at the Cambridge Institute of Medical Research

Prof Tim Cox

Prof. Tim COX –

Prof of Medicine, Cambridge Uni & Addenbrooke’s physician

Maria Picone TREND Community RAREfest20

Daisy Marriott –

Rare Revolution Magazine, living with Cholesteatoma 

Vicky Donald

Vicky Donald –

Rare disease mum to Holly with Neurofibromatosis type 1

Georgina morton Archangel MLD Trust RAREfest20

Georgina Morton –

Founder and Chairperson of ArchAngel MLD Trust

Caroline Hargrove profile pic

Dr Caroline Hargrove CBE FREng  –

CTO, Babylon Heath