Answering questions about rare inherited anaemia!

A ground-breaking group of rare disease stakeholders have come together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of rare inherited anaemias. The group is calling on all stakeholders in the rare anaemias field to help them address an issue commonly found in the rare disease community. Patients with rare conditions, and …

Congenital Anaemia Network – Family Day

Hello to all our DBA UK families, We just wanted to make you aware of an event that we as a community have been invited to, the Congenital Anaemia Network Family Day! It is being held on the 8th May from 11:30 am until 4pm, and is for anyone who has an inherited anaemia, like DBA and their family. It …

DBA UK Funding CRISPR Gene Research

Hello to all our DBA UK Patients, Families and Friends, we wanted to update you regarding some exciting research we have agreed to fund. Firstly though, a note from our Chair, Leisa Batkin – “For every cake baked… race ran…. river swam…. For every raffle, ball and gala. For all that our fundraisers have done, we have been busy behind the …

Support from Rainbow Trust

Hello DBA UK families and patients, Our chair Leisa Batkin has been hard at work making links with Rainbow Trust, which also has close ties to Dr Josu De La Fuente at St Mary’s in London. They can offer vouchers in order to help cover accommodation for those visiting Josu in London, please note that this is handled on a …

St Mary’s Hospital Celebrates 1000 FerriScans

St Mary’s Hospital Celebrates 1000 FerriScans From Perth to Paddington! St Mary’s Hospital has become one of the first hospitals in Europe to reach a milestone of providing 1000 FerriScans (the Gold Standard MRI for measuring Liver Iron Concentration) for children and adult patients. Celebrations were held to mark the achievement and the collaboration between Australian-based Resonance Health Ltd and …

IMAX for DBA UK!

Hello DBA UK Families, we have been contacted today by someone from the VUE Cinema in Cheshire Oaks, north of Chester, to offer out tickets to attend their red carpet opening of their new IMAX screen, to see the new Mission Impossible film on Wednesday 29th July! Each ticket includes a plus one, free prosecco and popcorn and an exclusive …