At the 2026 Annual General Meeting of Genetic Alliance UK ltd: Lara Bloom is proposed to be re-elected to the position of trustee; Silvia Cerolini, Kirsty Hoyle, Deb Lancaster and Dr Kiki Syrad are proposed to be elected to the position of trustee; Toby Hannam and Dr Shehla Mohammed are to be re-appointed to the position of trustee; and Professor Timothy Barrett is proposed to be appointed to the position of trustee, it is then the Board’s intention to elect him as chair.
Their biographies follow:
Timothy Barrett is Leonard Parsons Professor of Paediatrics and Child Health, Honorary Consultant in paediatric endocrinology and diabetes, and Director of the Centre for Rare Disease Studies, Birmingham.
Timothy has published over 200 research papers in scientific journals as well as reviews and book chapters in the fields of paediatrics, diabetes, and genetics of rare childhood diabetes syndromes. He has received over £20M in major grants from UK Medical Research Council, The Wellcome Trust, UK National Institute for Health Research, European Union Directorate General for Health and Consumer Affairs, Diabetes UK and Breakthrough T1D. His research interests include functional genetics of rare diabetes syndromes, translational research to early phase clinical trials in rare disease, and complex interventions to reduce health inequalities in childhood diabetes.
He is an enthusiastic teacher and communicator on the themes of genomics and rare diseases, and lectures widely at national and international level. Timothy contributes to the local and national media, advises the media on stories relating to childhood obesity, diabetes and rare diabetes, and has advised the UK Parliament Health Select Committee.
Lara is the President and CEO of The Ehlers-Danlos Society which is responsible for globally raising awareness of rare, chronic, and invisible diseases, specialising in the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness.
Her passion is pushing boundaries and fighting for progression in patient engagement and global collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020. Lara is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker.
Silvia Cerolini is a rare disease advocate and healthcare transformation leader with over 20 years of experience driving innovation across the life sciences, consumer and not-for-profit sectors.
As the mother of a daughter living with a rare inherited retinal disease, Silvia brings lived experience as a carer alongside deep professional expertise. She is the Founder and CEO of Eyes on the Future, a UK charity member of Genetic Alliance UK, and coordinator of the Global RDH12 Alliance, an international network dedicated to advancing treatments for RDH12-related inherited retinal disease. Silvia has played a leading role in building innovative patient–industry partnerships and creating a global network that brings together families, researchers, clinicians, industry and regulators to accelerate research from the laboratory into clinical trials, helping reshape the future of rare disease drug development.
Professionally, Silvia is Head of Transformation at Sanofi UK & Ireland, where she leads enterprise transformation, digital and AI innovation, and strategic partnerships across the healthcare ecosystem.
Passionate about transforming the future of life sciences, Silvia has been featured in national and international media and a regular speaker on patient partnership and innovation. She is a strong advocate for reimagining how patients, industry, academia and regulators work together to accelerate therapies for rare diseases towards a future of precision medicine.
Toby is a health policy and public affairs expert who has spent the last decade working in consultancy and in the UK parliament. Throughout his career, he has developed a deep knowledge of the UK health policy environment, with a particular interest in diagnostics and genomics. Toby supports clients to develop successful engagement campaigns that ultimately improve patient outcomes and service delivery. Through these experiences he was introduced to the leadership of the Genetic Alliance. Having personally experienced the transformational nature of a fast and accurate diagnosis, Toby has a particular passion in utilising his skills and knowledge to support people living with genetic conditions and their families.
Kirsty Hoyle is CEO of Metabolic Support and an experienced charity leader, strategist and change-maker. She is a leading voice behind the Living Well movement, which seeks to transform how quality of life is understood and supported for people living with rare conditions.
Previously CEO of Transport for All, Kirsty campaigned for the rights of disabled and older people to travel with freedom and independence. She has also held roles at Sense, Diabetes UK and Help for Heroes, working across the charity, public and private sectors to create lasting change and demonstrate the connection between accessible services, wellbeing and community participation.
Before moving into full-time charity leadership, Kirsty was an internationally recognised specialist in disability and cultural access. As founder of Include Arts, she led the pioneering national Relaxed Performance Project and shared her approach internationally through the British Council. Her work helped arts organisations around the world create more welcoming and inclusive experiences for disabled audiences and their families.
Deb has over 40 years of experience in the pharmaceutical and life sciences sector, including 25 years in oncology and more than a decade in executive leadership roles for major global companies.
In 2021, Deb moved to the public sector, as Executive Director of Scientific Partnership at Genomics England – focusing on advancing genomic research and collaboration in rare diseases and cancer. Since retiring from Genomics England in April 2026, she has continued to support the sector by leading a working group for the Rare Therapies Launchpad, now adopted by LifeArc, aiming to develop a route to access to individualised therapies for people with very rare conditions.
Alongside extensive experience in commercial aspects of Pharma, market access, strategy, and leadership, Deb has also served as a Trustee for Myeloma UK for the past two years, reflecting a strong commitment to improving the experience and outcomes for people living with serious and rare conditions.
Deb lives in St Albans with her partner and two sons, and enjoys live music, regular gym-going and travel.
Shehla is a paediatric clinical geneticist with 28 years’ experience predominantly in rare genetic conditions and in the care of children and families with complex life-limiting disorders. Until 2017, she had been Head of Service of the Guy’s Regional Genetics Service for 20 years.
Shehla has a special interest in translating new technologies into a clinical setting and to enable the successful delivery of multidisciplinary and patient-focused services. With a strong clinical and managerial background she has successfully advocated for rare diseases and has developed and leads national Highly Specialist Services for a number of complex disorders with colleagues from the dedicated Rare Diseases Centre at St Thomas Hospital, London. Shehla has been the Principal Investigator in Phase III clinical trials whilst fostering international collaborations to improve patient outcomes. She is currently a member of the Highly Specialised Technologies Evaluation Committee at NICE.
Dr Kiki Syrad is the Director of Research and Innovation at Great Ormond Street Hospital (GOSH), a role she has held since November 2023. She joined the hospital from the charity sector, where she spent more than 15 years in senior leadership roles.
Before taking up her current post, Kiki served as Director of Grants and Impact at Great Ormond Street Hospital Charity, leading the development of two five‑year research strategies that resulted in £120m of investment in research across the UK. Earlier in her career, she was Head of Research and Funding at Breast Cancer Now.
Kiki completed her PhD at the University of Melbourne, focusing on cancer therapies. As a researcher, she worked within the Angiogenesis Group at the Weatherall Institute of Molecular Medicine in Oxford, contributing to the identification of novel cancer markers and investigating a potential therapeutic cancer target. She currently serves as a trustee of the UCL ICH – The Child Health Research Charitable Incorporated Organisation (CIO). She has previously been a trustee of both the National Children’s Bureau and NHS Charities Together, bringing experience across children’s services, health policy and the wider NHS charity sector.