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DEBRA Members Join Our President To Raise Awareness of EB

5 June 2019

DEBRA’s president Falklands veteran, Simon Weston CBE, is touring the UK with a live stage show about his life and experiences. DEBRA Members Veronica and Michael Pearson and their family joined him as VIP guests for the first performance.

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Interim Appointments to Our Trustee Board

10 May 2019

Jim Irvine has been appointed as Interim Chair of Trustees and Jo Merchant as Acting Treasurer.

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Award-Winning Chefs Come Together to #FightEB

17 April 2019

On 14 June 2019, four award-winning chefs, including Michelin-starred chef Jason Atherton, will come together to support DEBRA and fight EB at the Butterfly Ball at the Royal Garden Hotel in Kensington.

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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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