Team & trustees
LESLEY BOOTH PhD MBE
Lesley supports Jo in the day-to-day management of CamRARE. A social scientist researcher, she has twenty years experience of working with hard-to-reach groups, and is passionate about education and providing opportunities to educate those who feel excluded, or, exclude themselves from the very systems that should support them. She has an unrivalled understanding of patient and public involvement and engagement processes and growing partnerships with clinicians, researchers and patients.
Events & Projects Officer
Lindsey is a Virtual Assistant with an events and marketing background. She has been involved with CamRARE since 2017 and supports Jo with the logistics and promotion of the CamRARE events programme. When she’s not helping CamRARE, 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 CamRARE’s website as well as suggesting anything and everything that would allow CamRARE to reach more people in the Rare Disease community.
Celia is a proud parent of a child with a rare disease. She and her family are members of the CamRARE’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 (CamRARE).
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 .
Trustee and Legal Director
Sarah works as a Legal Director at Bird & Bird LLP, within the firm’s Life Sciences and Healthcare Group. With over twenty years of experience, she advises clients on EU and UK laws, guidance and codes of practice concerning the regulation of medicines, medical devices and related areas. She previously spent 10 years as a Legal Adviser at the European Medicines Agency, advising the EMA and its scientific committees on a wide range of legal issues.
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 CamRARE began in 2015 when she had a speaking role at our first RAREsummit. Charlotte and her family are keen members of CamRARE’s Unique Feet rare disease community group and support with community fundraising for CamRARE.
Trustee, treasurer and equity investor
Ilan joined CamRARE’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.
Trustee, rare disease patient and parent
Loretta is a marketing and policy expert, and a writer. She worked in health technology for many years before becoming ill and eventually being diagnosed with Fabry, a rare disease. This affected both herself and two of her children. Her experience of the path to diagnosis; of teenage to adult health transition; and of the lack of support for young adults, particularly around mental health, lead her to set up her own website, My Fabry Disease, and to begin to advocate for people with rare disease.
Trustee and biotech COO
Trustee and company director
Emma is an accomplished clinical development specialist who provides advice and guidance to small and mid size bio tech companies. She has over twenty years proven leadership experience in clinical development, product development and programme management, delivering to strict timelines and budget. Currently, Emma is the Company Director, Life Sciences consultancy & Executive coaching, Akmazo Health Ltd., UK.
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 CamRARE 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 CamRARE 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 CamRARE 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.
Cambridge University Student
Georgina is a Biological Anthropology student at the University of Cambridge and is a rare disease patient with type 3 Ehlers-Danlos Syndrome. She began volunteering with CamRARE in 2022. Georgina is interested in bio-cultural approaches to Evolutionary Medicine and Genomics. Georgina volunteers with the Cambridge SU’s Disabled Student’s Campaign and advocates for those with rare diseases through educational content creating and writing.”