2022 in Review

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2022 in Review

As 2022 draws to a close, we are taking a moment to reflect on this year.


Our goal has always been to find a cure for EB. We continue to work towards this, with 100% of donations going directly to the research projects we fund. We fund projects working towards a genetic fix as well as those which will improve quality of life and provide symptom relief while work towards a cure progresses.

This year, we funded two new research projects – a pre-clinical gene editing project and a clinical trial for a drug treatment for RDEB-associated squamous cell carcinoma, a fatal complication of RDEB for which there is no current effective treatment.

We also saw the completion of a pre-clinical gene-edited bioengineered skin project and the results of a pre-clinical gene editing project were published in Nature Scientific Reports.


We were delighted to be able to welcome you back to some of our events this year!

We had a wonderful evening at our flagship fundraising event, the Silver Butterfly Dinner, at RIBA in May. We were thrilled to hold our Butterfly Run in September at the Olympic Park in London, as well as host our Family Day later that afternoon – a fun opportunity for our EB families to meet friends old and new while hearing about the latest research from a panel of speakers.

Community connection is so important to us, as a charity set up by the parents of a child with RDEB, and this year we launched our Family Forum to keep EB families up to date on current and potential research. We have also loved all the EB smiles shared with us this year – look out for more EB stories in 2023!


Earlier this year we launched Kaleidoscope Friends, for supporters that commit £1,000 a year or more. Regular giving is so valuable, allowing us to plan our spending on research on a secure donation base. As a thank you, we will host exclusive research update evenings and research webinars so that Kaleidoscope Friends can see where their donations are being spent.

And to round off the year, we again took part in the Big Give Christmas Challenge, the UK’s largest match-funding campaign, raising over £30,000 towards our gene editing projects.

We know a world without EB is possible. It is your support, funding vital research, that enables us to bring that world ever closer. Thank you.