Dr Deena Iskander has been appointed as a Consultant Haematologist

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 with Professor Josu de la Fuente at St. Mary’s Hospital. She will also be continuing her commitment to Diamond-Blackfan anaemia research by leading a research group on DBA at Imperial College London, in collaboration with …

COVID-19 UPDATE Guidance for Patients with Diamond Blackfan Anaemia Wednesday 4th Nov 2020

The National Haemoglobinopathy Panel have released the following documents for the latest Guidance for Patients with rare anaemias, including Diamond Blackfan Anaemia. Document 1 Haemoglobinopathy HCCs advice on risk assessment COVID-19 28.08.20 Advice to clinicians on risk assessment for severe COVID-19 in patients with haemoglobinopathies and inherited rare anaemias http://diamondblackfan.org.uk/wordpress/wp-content/uploads/Haemoglobinopathy-HCCs-advice-on-risk-assessment-COVID-19-28.08.20.pdf Document 2 Haemoglobinopathy HCCs update COVID-19 19.10.20 Updated advice to …

Global Bridges Amsterdam The DBA Symposium, June 10th -12th 2019

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 well attended, by clinicians, scientists and patient representatives from circa 25 countries, including China, France and the U.S. The programme was high quality and varied.  The role that DBA UK has played in individual researchers’ projects, …

DBA UK Family Weekend Summary 2019!

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 for the children and lots of conversations between families and patients affected by DBA. Below are the slides of the presentations that were given during the weekend, please note these are given ‘as is’, without …

EuroDBA: Building Global Bridges (2nd symposium, October 2017)

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 in attendance, spanning 27 countries, including China.   The meeting represented an opportunity to share experiences of living with DBA, understand developments in research and working towards greater global collaboration in our efforts to find …

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 …

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 …

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 …