For Press Enquiries Contact 

Laura Lomer  +447595 449705

Alternative contact : +447786805874




PR Newswire – Cure EB collaborates with three other EB charities globally to fund an anti-fibrotic drug


BBC Three ‘Living Differently – Me and My Butterfly Skin’ (link to watch on BBC site)

A short film (7:49) about Sohana’s daily life with RDEB


In August 2018, Cure EB received an incredible £80,000 cheque from the Phoebe Research Fund
Rutland & Stamford Mercury article
Peterborough Today article


The Sun – ‘Help our Poppy’: Mum makes heartbreaking plea for daughter, 6, with rare, painful skin disorder to enjoy life like other kids

Science Daily – Cause of aggressive skin cancer in patients with butterfly syndrome



Daily Mail – The brave little girl in constant agony from Butterfly Syndrome

Express – Mother of little girl with rare condition: A gene trial helped my daughter walk

Report on Sky News re #GeneTherapy. Skin grafts for a young boy with junctional epidermolysis bullosa




Sun – Brave boy has to be wrapped up like a mummy because the merest touch could cause his skin to FALL OFF

Sun – Meet the brave girl wrapped up like a mummy… because HUGS can leave her with serious burns


2015 – GMB surprises three child heroes

BBC News – The promise of gene editing

Daily Mail – Our daughter suffers like no child should

BBC – Londoner Tom Davies, 19, becomes ‘youngest person to cycle the world’

ITV – British teenager could be youngest ever to cycle around the world

Guardian – Teenager completes round the world cycle trip

Express – Tears as Tom, 19, becomes ‘youngest to cycle the globe’



Guardian – My fight to save my daughter’s skin



Islington Gazette – 11-year-old skin disease sufferer from Barnsbury goes on awareness campaign



Sunday Times Magazine – The Possibility of a Miracle (PDF)

Sun – Slightest touch makes our girl’s skin blister like she has third degree burns. It is heartbreaking

Islington Gazette – Young Barnsbury skin disorder sufferer meets Samantha Cameron at Downing Street

Here Is The City – debra to benefit from Goldman Sachs Gives gift 



Standard – First find the funds, then we can find the cure 



2015 – Celebrities lend support to girl with agonising skin condition


Twitter support

YouTube Video – BBC Lifeline Appeal for DebRA