Author Archives: DBA UK Admin

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 … Continue reading

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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 … Continue reading

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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 … Continue reading

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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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