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DEBRA News: General

Rare Disease Day 2021

28 February 2021

It’s #RareDiseaseDay2021 and we need your help to raise awareness of the painful genetic skin condition, Epidermolysis Bullosa (EB), because everyone matters.

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In memory of DEBRA Golf Society President, Peter Alliss

10 December 2020

All at DEBRA were sad to hear of the passing of the ‘voice of golf’ Peter Alliss, President of DEBRA Golf Society for over 25 years. Our thoughts are with his family at this time. 

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CEO Appointment confirmed by DEBRA Trustees 

1 December 2020

The Board of Trustees are delighted to announce that  Tony  Byrne has been offered and accepted  the CEO role on a permanent basis. 

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The Boy Whose Skin Fell Off

20 May 2020

The moving documentary following the final few months of of Jonny Kennedy's life as he fought and lost his battle with severe EB.

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The Brothers Trust host special screening for the EB Community

13 January 2020

The Brothers Trust invited DEBRA Members to a very special screening of the new Disney film, Spies in Disguise.

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