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 …

Genetic Alliance UK report on genome editing – “Genome editing technologies: the patient perspective”

Interesting report on genome editing from our friends at Genetic Alliance UK. Patients overwhelmingly support the use of genome editing technologies in research, where that research is focused on treating medical conditions. Further details can be found here: https://www.geneticalliance.org.uk/news-events/news/report-launch-genome-editing-the-patient-perspective/

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 …