Why London?

Because of our well-established links with King's College Hospital, London which is considered a centre of excellence for treatment of and research into aplastic anaemia nationally, we get easy access to meeting rooms. A large number of patients are also treated here, or have access to a shared care agreement between King's and a local treatment centre.

Plans are in train and bids for funding are awaiting decisions to enable a national roll out of the Aplastic Anaemia Support and Outreach programme across 8 regional locations. We know this is much needed so that everyone diagnosed can access a support group near where they live.

What was on the agenda this time?

The evening flew by sharing stories, discussing mental well-being and AAT plans for the future, as well as hearing an update from a prominent paediatric clinician on a much-needed research project funded by our supporters.

Proposal to establish UK paediatric bone marrow failure registry and biobank

Dr Sujith Samarasinghe from Great Ormond Street Hospital, London gave a comprehensive update on the project. It will be of enormous value to the paediatric haematology community in the UK as it will enable a much better understanding of the causes of aplastic anaemia (AA) thus leading to the discovery of novel genes that lead to childhood AA. A key part of the project will be the measurement of the Quality of Life in young AA patients using a novel approach to patient-driven research focusing on patient reported outcomes, co-developed by patients and Oxford academics.

Whilst UK is leading the way in paediatric aplastic anaemia in clinical research and treatments, there are problems as there is currently no data registry, no biobank, no understanding about the Quality of Life. This project will begin to address these issues. 

This vital research will also shed light on the role of the immune system in acquired childhood AA. The project is due to start in February 2019 and will run over 3 years. 

The importance of looking after your mental health

Philip, a member of the haematology counselling team at King's, discussed the different aspects of mental well-being, the difficulty patients with a rare life-threatening illness may face, post-traumatic stress symptoms and various every day techniques that can help cope with the challenges. Here is a simple breathing exercise worth trying:

The AAT plans for for 2019/20

Grazina Berry, the charity CEO, shared our achievements - made possible by our ardent supporters, and plans for the future. There is plenty of ambition and this is needed to make sure we grow and develop as an organisation, are able to support ever more patients and families being diagnosed and can commit to long-term research to make a lasting difference to the patients of today and future generations. The full presentation can be downloaded here.