Author Archives: Martin Winter

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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2017 Family Weekend BOOKING NOW OPEN

BOOKING IS NOW OPEN for our 17th Annual DBA Family Weekend Friday 19th May to Sunday 21st May 2017 There’s lots to read on what happened at previous Family Weekends. You can use our ONLINE BOOKING FORM here; http://diamondblackfan.org.uk/booking-form/ Or you can … 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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DBA UK Family Weekend 2016 Summary

Hello to all our DBA UK Families and Friends, we hope that those of you who attended our Family Weekend event at PGL Caythorpe found it useful, informative and a place for new connections. For anyone who wasn’t able to … 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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Final Preparations for Family Weekend 2016

Dear families and friends of DBA UK, We are now in the final preparation stages for the 2016 Family Weekend starting on Friday 20th May. We still have a few rooms left, and we would love to fill them all, so … 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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