We are a group of patients, carers, doctors and scientists who are all interested in patients with rare inherited anaemia. Our objectives are:
Noémi is the Chair of Trustees. She is a Consultant Haematologist at the Oxford University Hospitals NHS Foundation Trust and her work in rare inherited anaemias includes the diagnosis of conditions such as Diamond-Blackfan Anaemia, Congenital Dyserythropoietic Anaemias, Sideroblastic Anaemia and the red cell enzyme and membrane disorders.
Christian is a scientist with an interest in human genetics and how red blood cells are made. The focus of his work is to understand the causes of anaemia with the aim of developing novel therapies through genome editiing approaches and better understanding the mechanism of interferon treatment in CDA-I anaemia.
Resina has beta thalassemia and is also the parent of a child with a rare anaemia, CDA type 1. She works part time as a social worker.
Funmi is a Learning Disability Nurse working in Oxford, and a postgraduate student at King’s College, London. Funmi lives with Sickle Cell Disease.
Edward works in IT for charities. He is on the Board of Freegle (which helps people give and get things for free), Give a Kidney (which encourages live kidney donation) and Volunteer Edinburgh (which promotes volunteering in the city).
Katie works in the finance industry at J.P. Morgan Asset Management, based in London, where she helps a range of clients understand and invest in the US equity markets.
Lesley is a registered children’s nurse with many years of experience working in both hospitals and the community setting. As a Specialist Nurse at Oxford University Hospitals NHS Trust, she provides care and support across the Thames Valley to children and young people living with Sickle cell disease, Thalassaemia and rare inherited anaemias.
