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 …

DBA UK Family Weekend Summary 2023

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 and you learnt a lot from the medical professionals as well as talking to other families and patients affected by DBA. Below are the slides of the presentations that were given during the weekend, please …

DBA UK Chair Report 2020

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 been a privilege to support our families and support them in accessing the right information at the right time during the pandemic of COVID-19. The past year has been a challenging one with the COVID …

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 …

DBA UK now on Amazon Smile

We are pleased to announce another easy way to raise funds for DBA UK, and you don’t even need to bake a cake or run a marathon! DBA UK is now a registered charity with Amazon Smile! Simply log in to Amazon using the link below and choose Diamond Blackfan Anaemia Support Group UK (Registered Charity Number 1083179) – https://smile.amazon.co.uk/ch/1083179-0 …

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 …