Team & trustees
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 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!
Social Media Manager
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 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.
Our board of Trustees
Our trustees include some of the UK’s foremost experts in rare diseases and our founding members come from diverse backgrounds in academia, business, healthcare, education and patient support networks.
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. JONATHAN MILNER
Trustee and biotech entrepreneur
Jonathan, co-Founder and currently Deputy Chairman of Abcam plc, is an entrepreneur and investor and is passionate about supporting UK life science and high-tech start-ups. He has provided considerable investment and support to over 40 companies and has assisted three technology companies to IPO on the London AIM Stock exchange.
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.
Trustee, treasurer and equity investor
Ilan joined CRDN’s board in 2019 as treasurer and helps oversee finances.
He has been with Nomura Asset Management since 2012 having previously been a Partner at Redburn Partners. Ilan has been an equity investor for over 20 years and has been co-managing the NAM Global High Conviction strategy since early 2014.
We are fortunate to have an army of volunteers who regularly help with our events, marketing and other tasks. Some, such as those below, have consistently supported us over a period of time on a range of projects.
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.
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.
Medical Student, King’s College London
Angela is a medical student at King’s College London with a masters in Genomic Medicine from the University of Cambridge. She has been volunteering with CRDN since 2020, and is particularly enthusiastic about raising awareness about rare diseases among medical students and healthcare professionals. Angela is part of the founding committee of Cambridge University Genomic Medicine Society, and co-hosts their educational podcast Genomics Unravelled with Lydia Seed.