JO BALFOUR

Managing Director

 Jo is a founding member of CRDN and Managing Director of the charity. She is the creative director and master of perfect delivery behind CRDN’s innovative, patient-centric events programme: RAREfest; RAREsummit; networking and educational events. Jo is the founder of the CRDN Unique Feet activity and community support group for families affected by rare conditions.

LINDSEY BROWN

Event Consultant

Lindsey is a Virtual Assistant with an events and marketing background. She has been involved with CRDN since 2017 and supports Jo with the logistics and promotion of the CRDN events programme. When she’s not helping CRDN, Lindsey enjoys walking, spending time at her allotment or eating cake with friends!

GEORGE NICOLAOU

Web Developer

George is a Web Developer with a passion for all things Open-Source and loves tinkering with new programming languages. George provides his coding expertise in relation to CRDN’s website as well as suggesting anything and everything that would allow CRDN to reach more people in the Rare Disease community.

CELIA ENDERLE

Community Comms

Celia is a proud parent of a rare disease. She and her family are members of the CRDN’s Unique Feet rare disease community. Always busy in the community, Celia is a teacher, coach and wellbeing specialist. Celia really enjoys celebrating and strengthening the Unique Feet community through producing the newsletter.

DR. Gemma Chandratillake

Chair and genomics education lead

Gemma is trained as a molecular geneticist and genetic counsellor.  She has a long-standing interest in rare genetic diseases, having used both fruit flies and worms to model alpha-1-antitrypsin deficiency and Niemann-Pick type C disease in the lab.

DR. TIM GUILLIAMS

Founder, trustee and biotech CEO

 Tim is a social entrepreneur passionate about delivering the next generation of therapeutics to rare disease patients in need. He is the Co-Founder and Chief Executive Officer of Healx, an AI company with a mission to repurpose drugs for rare diseases. He is the Co-Founder and was the first Chair of the Cambridge Rare Disease Network (CRDN).

DR. SARAH LEITER

Trustee and medical doctor

Sarah was born and raised in Germany, moving to the UK for education and to  pursue a long-held ambition to study medicine. During her undergraduate training at the University of Cambridge,  she undertook research  and a PhD to further her passion for understanding the basic science underlying medical practice.  Sarah has the rare condition Albinism .

MRS SUE BERRY

Trustee and rare disease parent

Sue is a rare disease parent. Her daughter, Charlotte has Coffin Sirius Syndrome. Sue’s involvement with CRDN began in 2015 when she had a speaking role at our  first RAREsummit.  Charlotte and her family are keen members of CRDN’s  Unique Feet rare disease community group  and support with community fundraising for CRDN. 

Lydia Seed

Medical Student, University of Cambridge

Lydia is a medical student at the University of Cambridge. She has been volunteering with CRDN since the start of the pandemic in 2020, where she helped design a Hospital Passport for rare disease patients at a time when families were anxious about hospital visits and teams were redeployed. Lydia has a Masters in Genomic Medicine and recently founded the Cambridge University Genomic Medicine Society. She is also Co-host of the educational podcast Genomics Unravelled.

Heather Turner

Policy Analyst,  PHG Foundation

Heather is a policy analyst working at the PHG Foundation where she supports a diverse work programme centred around genetics and health. During her Masters studies in Genomic Medicine, she developed a passion for community engagement and awareness of rare disease. She has supported several CRDN events, including RAREfest, RAREsummit and the Rare Disease Theme at the Pint of Science Festival.