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DEBRA News: General

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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New Trustee Appointments

18 December 2019

We are delighted to announce that Jim Irvine has been appointed Chair of Trustees with Jo Merchant appointed as Treasurer.

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DEBRA Member Myra Ali Shakes Her Beauty to #FightEB

1 March 2019

DEBRA Member Myra Ali, who has EB, recently filmed the mini documentary "Shake My Beauty" with Barcroft TV. Watch it here. 

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#ShowYourRare and #FightEB for Rare Disease Day

13 February 2019

Raise awareness of EB and show your support for the EB Community throughout February by posting a selfie on Twitter, Instagram and Facebook with the hashtags #FightEB and #ShowYourRare.

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