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.
Dr GILES YEO –
Principal research associate, MRC Institute of Metabolic Science, author, BBC presenter
Dr Melita Irving –
Consultant, Clinical Genetics, Guy’s and St Thomas’ NHS Trust, author
Adam Pearson –
Actor, presenter, speaker, owner of a rare disease and disability rights campaigner
Dana PERELLA –
Founder, Cookies4Cures, raising funds for rare disease research one cookie at a time
Onno Faber –
Entrepreneur, public speaker, rare disease patient, Co-founder & CEO of Rarebase
Dr Lucy McKay –
Founder and CEO, Medics4RareDiseases, trained doctor
Prof Bobby Gaspar –
CEO, Orchard Therapeutics, a pioneer in gene therapy, UCL, GOSH Institute of Child Health
Dr Kat Arney –
Science writer, broadcaster, public speaker. Founder, First Create The Media
Prof Stefan Marciniak
Prof of Respiratory Science, Cambridge Institute for Medical Research (CIMR)
Maria Picone –
Caregiver, Co-Founder and CEO, TREND Community, USA based
Graham Miller –
Documentary photographer, founder of Really Real Resources
DR Jenny Dickens –
Clinician scientist, respiratory consultant, Addenbrooke’s, Royal Papworth, CIMR
Rudy Benfredj –
Co-founder and CEO, Mendelian
Shirlene Badger –
Patient Advocacy Specialist, Illumina
Ceridwen Hughes –
Photographer, Art Director, Same But Different
Dr Jason Mellad –
Co-founder and CEO of Start Cordon
Jordan Mossom –
Documentary photographer, living with Duchenne Muscular dystrophy
Tom Almeroth – Williams
Communications Manager, Uni of Cambridge, rare disease dad
Ross Lannon –
Blogger (A Life on Wheels), living with Spinal Muscular Atrophy
Georgia Hart –
Youth Ambassador (teens), Rare Revolution Youth, living with Friedreich’s Ataxia
Eddison Miller –
Rare Revolution Youth, living with Xeroderma Pigmentosum
Nikita Zubkov –
Research Assistant, Cambridge Institute of Medical Research
Dagmar Bennett –
Sculptor & Creative Producer, Fellow Royal Society of Arts
Simone Manso –
Head Neurofibromatosis Strategic Partnerships, Healx
Eimear Rutherford –
PhD student at the Cambridge Institute of Medical Research
Prof. Tim COX –
Prof of Medicine, Cambridge Uni & Addenbrooke’s physician
Daisy Marriott –
Rare Revolution Magazine, living with Cholesteatoma
Vicky Donald –
Rare disease mum to Holly with Neurofibromatosis type 1
Georgina Morton –
Founder and Chairperson of ArchAngel MLD Trust
Dr Caroline Hargrove CBE FREng –
CTO, Babylon Heath