The Butterfly Run – the results are in!
Wow! What a fantastic day we had on Sunday. The sun shone and so did the smiles of our runners and supporters. The results are in...
27 September, 2022
Author: sharmila
27 November, 2018
Cure EB joins consortium to fund anti-fibrotic treatment
We're pleased to announce that Cure EB is joining three other EB charities to fund the clinical development of a new anti-fibrotic drug called TXA127. Click to read press release from Constant Pharmaceuticals. ...
07 September, 2018
Researchers discover cause of aggressive skin cancer in RDEB
Scientists at the Sidney Kimmel Cancer Center at Jefferson University have discovered the cause of aggressive skin cancers in Recessive Dystrophic Epidermolysis Bullosa (RDEB) Click to see report from Jefferson University...
11 June, 2018
First Patient Dosed with Dystrophic Epidermolysis Bullosa Treatment, KB103
Krystal Biotech have announced that the first patient has been dosed in the Phase 1/2 clinical trial of its drug, KB103, for the treatment of dystrophic epidermolysis bullosa (DEB). The Phase 1/2 trial at Stanford University is a single-centre, open-label, placebo-controlled study conducting an intra-subject comparison...
11 June, 2018
CU Anschutz scientists awarded $3.8 million Department of Defense grant
In 2016, together with two other US based medical research charities, we funded the EB iPS Cell Consortium, which includes researchers from leading universities in the US. The results of its early work were so promising that it leveraged a major grant of $3.8 million,...
11 June, 2018
‘Butterfly child’ given life-saving skin
A seven year old boy with Junctional Epidermolysis Bullosa child received genetically modified skin grafts and almost two years later his skin is functioning as normal. Skin cells were taken from Hassan in 2015 and genetically modified by a group of researchers. The cells were...
16 June, 2016
Sohana speaks at #WEDay UK
Sohana speaking at #WEDay UK on 9 March 2016 ...
18 December, 2015
BBC News – The promise of gene editing
Sharmila Nikapota, the mother of a child with a rare genetic disorder, has high hopes for gene editing...
18 November, 2015
Two NEW projects funded!
Lenticol -M Mesenchymal Stromal Cells engineered to express Collagen VII for the treatment of RDEB Dr Waseem Qasim, Professor J McGrath, Francesco Dazzi Further info A trial is currently underway to test the ability of fibroblasts to provide collagen VII in the skin of patients with...
29 September, 2015
Mirror Newspaper – Schoolgirl’s skin blisters and burns if mum hugs her
http://www.mirror.co.uk/news/real-life-stories/schoolgirls-skin-blisters-burns-mum-6491436...