“the difference we make” Friday 8th May 2026 – Sunday 10th May 2026PGL Centre, Caythorpe Court Booking has now closed. The theme for this year...
View the presentation on DNA, Genes, and Genetics given by John Strouboulis at this year’s DBAS Family Weekend:
...When Alba was diagnosed with Diamond Blackfan anaemia syndrome, it started a journey that would involve the whole family and would go on to give...
As of November 2023 NHS Blood and Transplant service (NHSBT) removed the requirement for fresh blood (<10 days old) used for transfusions for sickle cell,...
For all asking for the new patient guidelines here’s our digital copy for 2024. These are international guidelines so applicable to our international friends and...
Have you noticed our fresh look? We’re excited about our rebrand, but it’s more than a logo change. It’s about a renewed focus on the...
Dr Deena Iskander has been appointed as a Consultant Haematologist at Imperial College Healthcare Trust. She will be co-leading the Inherited Bone marrow Failure service...
Thank you to Brad Lemon for running this year’s Great North Run. He sent some great photos and we even got a mention at the...
A huge thank you to everyone who joined us at PGL Caythorpe for the DBA UK Family Weekend. We hope your children enjoyed the activities...
This is the 9th Chair Report that I have had the privilege to present to you at the AGM. In these unusual times, it has...
The National Haemoglobinopathy Panel have released the following documents for the latest Guidance for Patients with rare anaemias, including Diamond Blackfan Anaemia. Advice to clinicians...
This information has been produced following virtual meetings with representatives from the Haemoglobinopathy Co-ordinating Centres (HCCs) for Haemoglobin Disorders, the Clinical Reference Group for Haemoglobin...
Global Bridges Amsterdam June 2019 Martin Winter, DBA UK (with contributions from our Research ambassador, Dr. Noémi Roy) This meeting was excellently organised. It was very...
A huge thank you to everyone who joined us at PGL Caythorpe for the 19th DBA UK Family Weekend for presentations from medical professionals, activities...
The 2nd “EuroDBA: Building Global Bridges” meeting in Freiburg, Germany commenced on 5th October 2017. Over 115 clinicians, researchers or family support group representatives were...
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...
