Medicine and Me: Living our best life - examining innovations to deliver optimal care for people with genetic bleeding disorders

Ms Kate Burt has spent most of her career in leadership roles in the third sector at organisations including Variety Children’s Charity, the King’s Trust and Leonard Cheshire. Ms Burt has been Chief Executive at the Haemophilia Society since 2020. 

2024 was a pivotal year in the history of the Haemophilia Society with the publication of the Infected Blood Inquiry report into “the worst treatment disaster in the history of the NHS” and also the licensing of gene therapy for haemophilia B. 2025 marks the charity’s 75th anniversary and in this milestone year there is much more to be done to raise awareness including for Von Willebrand disorder, the rare bleeding disorders and access to equitable treatment and care for women and girls. 

Mr Clive Smith is the youngest of 3 brothers, all with severe haemophilia A. Mr Smith is the former Chair of The Haemophilia Society, having spent 9 years as a trustee and 6 years as chair. 

In 2024, Mr Smith took over as President of The Haemophilia Society. He is also the Chair of the World Federation of Hemophilia (WFH) Youth Committee and a former member of the board of directors of the WFH. Mr Smith is currently a patient representative on the UK Rare Diseases Framework Board. Outside his work in haemophilia, he is also a barrister. 

Dr Nicola Curry is a haematologist working in Oxford with a clinical practice in disorders of bleeding and clotting. Dr Curry chairs the United Kingdom Haemophilia Centre Doctors' Organisation (UKHCDO) Girls and Women with Bleeding Disorders Working Party and is a committee member for the UKHCDO Musculoskeletal Working Party. Dr Curry sits on The International Society on Thrombosis and Haemostasis Scientific and Standardization Committee for Fibrinogen and FXIII committee and is a committee member of the British Society of Haemostasis and Thrombosis.

Dr Nicola Curry's main interests include the care of women with bleeding disorders and the care of patients with major bleeding after traumatic injury.

Dr Charles Percy undertook sub-specialist training in haemostasis and thrombosis in Wales, including completion of a PhD at Cardiff University. Dr Percy is a currently a Consultant Haematologist and the Clinical Service Lead for laboratory haematology at University Hospitals Birmingham NHS Trust, and Co-Director of the West Midlands Adult Comprehensive Care Haemophilia and Thrombosis Centre.

Dr Percy is the current Chair of United Kingdom Haemophilia Centre Doctors' Organisation (UKHCDO) Inhibitor Working Party and a member the National Haemophilia Database Adverse Events Review Panel. He is a member of the clinical reference group and Chair of the procurement subgroup for specialised blood disorders at NHS England. Dr Percy is a principal investigator in various clinical trials.

Dr Susie Shapiro is a Consultant Haematologist and works entirely in the field of haemostasis and thrombosis: haemophilia and other bleeding disorders, thrombosis and anticoagulation at Oxford University Hospitals. Dr Shapiro has particular interest in improving patient safety, with projects to optimise anticoagulation winning national awards; and in improving knowledge of aging and comorbidities in haemophilia including with respect to new innovative treatments. She is actively involved in clinical research trials, including many as Local Principal Investigator and National Chief Investigator. Dr Shapiro enjoys teaching and runs national monthly haemostasis talks for haematology trainees and multidisciplinary colleagues.  

Dr Shapiro is currently Head of Department for the Oxford Haemophilia and Thrombosis Service, having previously been Director of the Oxford Haemophilia Service 2018-2022. She is the National Speciality Advisor to NHS England for Specialised Blood Disorders, actively involved in several United Kingdom Haemophilia Centre Doctors' Organisation (UKHCDO) working parties, member of the Medical and Scientific Advisory Group for the UK Haemophilia Society, and Co-Chair of the Scientific Subcommittee on FVIII, FIX and Rare Coagulation Disorders for the International Society of Thrombosis and Haemostasis. Dr Shapiro is also an Associate Professor of Haematology at Oxford University, and her research interests complement her clinical work.

Dr Mary Mathias is a Consultant Haematologist at Great Ormond Street Hospital (GOSH) for Children, specialising in thrombosis and haemostasis. Dr Mathias is the Haemophilia Centre Director. The team cares for over 150 children with severe bleeding disorders including haemophilia, rare factor deficiencies and platelet disorders. As a result of the size and location of the centre, they manage a cohort of boys with long-standing inhibitors to FVIII and FIX and are always striving to improve their care.  

Dr Mathias is the UK Principal Investigator for three current investigational medicinal product (IMP) trials and continues the long-standing research interest at the GOSH Haemophilia Centre; the team there having been involved in 9 IMP studies within the last 10 years, which have provided access to evolving treatments for their patients, particularly for boys with inhibitors to factor VIII or IX. She is the Secretary of the United Kingdom Haemophilia Centre Doctors' Organisation (UKHCDO), Chair of the UKHCDO Paediatric Working Party and a member of the Glanzmann’s Thrombasthenia Working Group of the European Association for Haemophilia and Allied Disorders.