Category Archives: Social Welfare

Happy New Year!

We at the DBA UK Committee want to wish all of our DBA patients and their families a very Happy New Year! We will have some exciting developments for you during 2016, both in terms of ongoing research and the … Continue reading

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Genetic Disorders UK Symposium 2015

Hello DBA UK families, this is a quick news post to let you know about an event that two of our committee members attended on the 6-7th March in London. The Genetic Disorders UK group, in partnership with Global Genes … Continue reading

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DBA UK Family Weekend 2014!

A huge thank you to everyone who came along to PGL Caythorpe for the 14th annual DBA UK Family Weekend and made it thoroughly enjoyable! We had around 160 people join us for some fantastic talks, activities and opportunities to … Continue reading

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Free E-Book – Rare Genomics

Hello everyone, we just wanted to let you know about a free e-book you can download from the Rare Genomics Institute, the book is called “Rare Diseases – Diagnosis, Therapies and Hope”. You can download this book for free here … Continue reading

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Rainbow Trust Children’s Charity

Hi everyone, we wanted to let you know about Rainbow Trust Children’s Charity, a UK based charity that provides practical and emotional support to families who have a child that has a life threatening illness, such as DBA. Rainbow Trust … Continue reading

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MyBuilder.com’s Hero Project 2013

Thanks to Granny Christine Castle, tradesman James of Rothwell James has played Hero to the parents of an eight-year-old from Watford with a rare and life-threatening blood disorder, Diamond Blackfan Anaemia. On Thursday (Dec 5th) the big-hearted bathroom fitter has … Continue reading

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DBA UK Family Weekend 2013!

A huge thank you to everyone who came along to PGL Caythorpe for the 13th annual DBA UK Family Weekend and made it our highest attended so far! We had nearly 170 people join us for some fantastic talks, activities … Continue reading

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Free Tax Disc from DVLA

Another snippet of Social Welfare information, you may also be entitled to a free tax disc for your car if you are claiming the higher rate of the mobility component of Disability Living Allowance. Claiming a free tax disc can be … Continue reading

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Cinema Exhibitors’ Association Card

Just a quick post to let you know that if your family is claiming Disability Living Allowance, you are able to apply for a Cinema Exhibitors’ Association Card. This is a national card that can be used to verify that the holder … Continue reading

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Leisa’s social welfare guide

Leisa Batkin kindly wrote a social welfare and benefits guide for us, taken from her personal experiences having a DBA child. Although this is written very much from a personal perspective, she suggests that many other patients can benefit in … Continue reading

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