Our Research


Our Mission

Our mission is our name – to cure EB.

Our research is centred around this goal.

Our strategy is focused research around developing treatments to provide symptomatic relief, quality of life change and those projects aiming to cure the condition.

Our Vision

Our vision is bold. In 10 years,

  • we want effective, whole-body treatments for those living with EB
  • we want a cure for EB
  • we do not want to need to exist.

Our vision underpins everything that we do.

We are proud to be a fully research-focused charity.

The momentum created over the last decade means that effective treatments and a cure are a real possibility.

Our vision will become reality, through targeted funding and collaboration with universities, biotechs, charities, research foundations, government organisations and clinicians.

Our research strategy

Why we fund research

Cure EB (formerly the Sohana Research Fund) was set up in 2011, by the parents of Sohana Collins, a young child with Recessive Dystrophic Epidermolyis Bullosa (RDEB). Seeing the pain and suffering caused by EB firsthand was the driver to set up a charity solely dedicated to funding research into effective treatments, and ultimately a cure, for all forms of EB.

“Watching Sohana suffer the agonizing pain of EB every day is the best incentive to push forward research to find a treatment for all. Medical miracles happen, but they need to happen in the form of dedicated research funding.”
Sharmila Collins (Sohana’s mother, Founder and Trustee of Cure EB)

Our research priorities

Our primary goal is to find a genetic fix – correcting or replacing the genetic faults that underpin each type of EB.

However, we want effective treatments for EB sufferers now, while work towards a cure develops. Therefore, we fund cell, gene, drug and protein research for symptom relief and quality of life improvements. An important element of this is working closely with the National Health Service to develop pathways to accelerate effective treatments into routine clinical care.

Our primary focus is on translational research projects (that is, projects that focus on taking discoveries from the lab to patients) and early phase clinical trials.

We also fund projects targeting the treatment of specific EB related health issues and developing new technologies towards treating all types of EB.

We aim to correct or replace the genetic fault that causes the condition and manage the consequences of that fault.

The research we fund

Cure EB considers applications from clinicians, clinician-scientists, and researchers within the UK and internationally.

All projects should relate to a treatment of local or systemic benefit to EB sufferers. Pre-clinical and early clinical work should demonstrate a pathway to future clinical application. We do not generally fund basic laboratory research.

We encourage collaboration between groups and we have a track record of collaborative funding with other EB charities, research foundations and government organisations to maximise the impact of our funding.

We also partner with commercial organisations to accelerate EB treatment development.

Most projects will fund seek funding for up to 2-3 years, although support for a maximum of 5 years will be considered.

Cure EB reviews applications and collaborative funding opportunities that meet our strategic aims throughout the year.

For more details, visit our Applying for Funding page. You can also view our current research and completed research projects.

Our impact

Our Impact Statement summarises our progress over our first 10 years and outlines our plans for the next 10!