Genetic Disorders UK Symposium 2015

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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 and some very kind sponsors, held an event at Charing Cross in London. This was for committee members of charities for rare genetic conditions.

This was a fantastic learning experience for us as a charity and can now be useful for all of our members too, as Genetic Disorders UK has kindly made all the talks and presentation slides available to download at this link.

You can also search Twitter for a variety of posts and pictures from the event by searching for  #GDLS2015 on twitter by clicking this link.

This was a busy and varied programme, but we would urge you to take the time to listen to all of the talks when you have some free time as they would all be relevant to everyone in different ways.

Particular stand out talks for us at DBA UK were Rett UK and Max Appeal! discussing “Healthcare Guidelines”, Eleanor Wright and Angela Jackman talking about “Education, Health and Care Plans”, Robbie Spence from Disability Rights UK discussing “Updates to the benefits system, DLA and PIP” and finally Prof. Bobby Gaspar’s talk about “Gene Therapy”. But the entire programme has something of interest for everyone.

If you have any questions about the talks or the event and would like to know more, please email the DBA UK Secretary at – secretary@diamondblackfan.org.uk

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