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New Research Supports EB Cancer Trial

12 April 2019

New research suggests Rigosertib may be safe and effective in combating EB cancer. We’re funding a clinical trial to take it to the next stage.

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Young EB sufferers highlight need for organ donors

5 March 2019

13 year old Grace Fincham, who has a rare form of EB which causes weakness to her heart, recently received a lifesaving heart transplant. But her brother Freddie, who has the same type of EB, needs one too

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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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President of DEBRA International and DEBRA UK’s Chair of Trustees, Mike Jaega, has sadly passed away

7 February 2019

It is with great sadness that we announce that Mike Jaega, President of DEBRA International and DEBRA UK’s Chair of Trustees, passed away yesterday, Wednesday, 6 February.

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