Author Archives: DBA UK Admin

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 … Continue reading

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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 … Continue reading

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Jeans for Genes Day/Genetic Disorders UK Grant for DBA UK

DBA UK are delighted to announce details of a GBP 5,000 grant towards the DBA family weekend in 2017.  The grant has been awarded by Jeans for Genes Day / Genetic Disorders UK, following our successful application in 2016. Jeans … Continue reading

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Great North Run (The World’s Biggest Half Marathon) 2017

Dear families and friends of DBA UK, this is just a quick update to let you know that we have 21 places left for the Great North Run this year. The run will take place on Sunday, 10th September 2017. It will … Continue reading

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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 … Continue reading

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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/

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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 … Continue reading

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Congenital Anaemia Network – Family Day

Hello to all our DBA UK families, We just wanted to make you aware of an event that we as a community have been invited to, the Congenital Anaemia Network Family Day! It is being held on the 8th May … Continue reading

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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 … Continue reading

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Support from Rainbow Trust

Hello DBA UK families and patients, Our chair Leisa Batkin has been hard at work making links with Rainbow Trust, which also has close ties to Dr Josu De La Fuente at St Mary’s in London. They can offer vouchers … Continue reading

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