Diamond Blackfan Anaemia (DBA) is a rare blood condition characterised by an inability to produce red blood cells, necessary to carry oxygen around the body. Patients are usually diagnosed before the age of two and require extensive treatments including monthly blood transfusions, nightly infusions of drugs via injection, high doses of steroids and in some cases bone marrow transplants. The condition is very rare with only around 125 cases in the UK so knowledge of treatments in the medical community is limited. As a result patients and carers can be left isolated and struggling to gain access to the right care and support.
At DBA UK we aim to provide support, research and hope to the DBA community by bringing families together to share their experiences, communicate the latest medical information and raise funds to support each other. Our Charity is run by volunteers and has relied entirely on the individual fundraising efforts of its members since its inception in 1999. Advances in medical science and the strengthening of our own networks within medicine have presented an opportunity for us to pursue some key research projects which we would like to fund entirely ourselves. In order to achieve this we need to raise additional funding to pay for the vital support initiatives that we provide to our members, such as our annual conference.
We would like to talk with you about how you can help give support, research and hope to those affected by DBA in the UK. To find out more please contact Kieran Teasdale, the DBA UK secretary.