We provide a round-up of discussions, presentations, guest conversations and key takeaways from CAN's Congenital Dyserythropoietic Anaemia, Type 1 (CDA-1) conference held in Leeds, 7-9 November 2025.
CAN Trustee and Learning Disability Nurse, Funmi, plans to research how cognitive difficulties may impact the lives of people living with Sickle Cell and is looking for supporters to talk to to help support with this research project.
Scientific research is essential in promoting our understanding of rare diseases and for developing novel and life-changing therapies. CAN is funding Dr Brolih's work using a variety of biochemical and biophysical techniques to characterise CDIN1, the disease protein of CDA-1.
We share a video insight into what is involved when you go to hospital for a blood transfusion. It was made by a young person who has beta-thalassemia major and who attends Royal Manchester Children's Hospital for his transfusions.
Thank you to the South West Haemoglobinathy Coordinating Centre for welcoming CAN to its first Thalassaemia and Rare Inherited Anaemia in-person patient event in Bristol. This was organised and hosted in collaboration with the Red Cell Network.
John was born in Nigeria but has called Oxford home for more than a decade. He has learned to transform the lifelong pain of living with Sickle Cell Disorder into creative power. He shares more about his published poetry with us.
A big thank-you to teens Robi and Lucas who raised more than a whopping £2,000 to help CAN continue our work. Both boys have rare anaemia diseases that make them more tired so to participate in long walks is really admirable and CAN is so grateful to them both.
Year 12 student Tilly speaks with community pharmacist, Olabike, who has sickle cell disease (SCD) which means Olabike's red blood cells cannot carry as much oxygen and can cause blockages in small blood vessels, resulting in a sickle cell crisis.
Yvette is a painter, visual artist and textile designer who is based in London. She shares what life has been like growing up with Sickle Cell Disease and how she adapts her everyday living to manage this condition.
Robi was diagnosed with Congenital Dyserythropoietic Anaemia type 1 (CDA-1) as a young baby. People with CDA-1 make red blood cells more slowly than normal in the bone marrow and break them down faster than normal in the blood vessels.
