Between 5 and 7 May while the rest of the country – not to say the world – was focused on the coronation of the new King, a small band of us gathered in a hotel in Leeds for what we believe is probably the world’s first CDA patient conference.
“CD what?” CDA stands for Congenital Dyserythropoietic Anaemia and is a very rare inherited anaemia. We don’t really know how many people have it, but it’s probably somewhere between 1:100,000 to 1 in a million.
Five families affected by CDA gathered with healthcare professionals and members of the CAN team for a series of talks and workshops, ranging from what research is new in CDA, the role of the specialist nurse, and what registries exist that collect data on CDA patients.
Specialists dialled in from as far as the USA and Italy to give us the most-up-to-date information available on this condition. But the best part of the weekend was people getting to spend time with others living with the same rare condition, sharing stories and building up support networks. We are always #strongertogether.
