Cure EB exists to find effective treatments and a cure for epidermolysis bullosa, a severe and very painful skin condition that leads to blistering and skin loss from birth. Those with the condition live in constant pain associated with burn like wounds, that never heal. Cure EB accelerates focused research developing treatments to provide symptomatic relief, quality of life change and projects aiming to cure this devastating condition.
Imagine having severe burn-like wounds all over your body
Imagine hours of painful dressing changes every single day of your life
Imagine an unbearable itch, that if you scratch creates further wounds and blisters
…and then the possibility of an aggressive skin cancer in your 20s
Sohana Collins has lived with the pain of EB all her life. She has coped with blisters in her mouth and oesophagus and needing to eat despite them. She has blisters and wounds on her feet but still needs to walk. She draws and writes with gloved hands and scarred, painful fingers but would like to pursue an arts degree. Sometimes she cannot see for days because of excruciatingly painful corneal blisters which makes her miss out on life.
Sohana was part of a clinical trial funded by Cure EB which provided short term relief from the devastating symptoms of the condition. But her ultimate dream, and the dream of so many others, is for a long term, effective treatment to heal the skin and enable her to live a normal life, pain free.
Imagine a cure…
Our primary goal is to cure EB, that is to find a genetic fix, by correcting or replacing the genetic faults that underpin each type of EB.
We also want to improve the lives of EB sufferers now, through the development of effective treatments that provide symptom relief and quality of life change.
Therefore, the research we fund falls into five categories: gene therapy and gene editing, cell therapy, drug therapy, protein therapy, and EB cancer therapy.
An important element of this is working closely with the National Health Service to develop pathways to accelerate effective treatments into routine clinical care.
As we move into an era of clinical trials for EB patients, Cure EB hosts regular research updates with leading experts and clinicians to share progress here in the UK and globally. With webinars, and family fun days we bring the community together to keep them informed about ongoing research and clinical trials.
As a rare genetic condition, many people have not heard of EB, despite the devastation that it causes. With 5000 sufferers in the UK, 500,000 worldwide, it is important to raise awareness of the condition and we do this with our videos, newsletters, press, e-news and social media.
And, with donations matched by the MariaMarina Foundation and two generous supporters, every pound you donate will be doubled up to £35,000.
The Radio 4 appeal ran between 14 – 20 May, and was broadcast on BBC Radio 4 on Sunday 14th May 7.54am and 9.25pm, and Thursday 18th May 3.27pm. (You can listen again on BBC Sounds.) But the appeal continues, so do please support us if you can.