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

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 …

Family Weekend 2019 Booking Now Open

DBA UK Family Weekend 2019 booking is now OPEN! The weekend will include the charity AGM which will be on Sunday 19th May. You can use our new online booking form here – https://goo.gl/forms/cPhCPxPXbqmSUOLg1 This year’s DBA UK Family Weekend is being held over the weekend of the Friday 17th, Sat 18th and Sun 19th of May. As with previous …

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 …

2018 Family Weekend

BOOKING IS NOW OPEN for our 18th Annual DBA Family Weekend Friday 8th June to Sunday 10th June 2018 You can use our ONLINE BOOKING FORM here; http://diamondblackfan.org.uk/booking-form/ Or you can use the old style invitation and booking form, which you will need to fill in and email/post to treasurer@diamondblackfan.org.uk   Booking Form (pdf format)  Weekend Information (pdf format)  Our Family Weekend will be …