Dine with DEBRA lunch aboard the Fingal, Edinburgh raises £20,000

We’re thrilled to announce our dine with DEBRA lunch aboard the floating Fingal hotel in Edinburgh has raised £20,000 towards our A Life Free of Pain appeal. Read more

DEBRA Fight Night 2023, hosted by Frank Warren, raises over £180,000

We're delighted to announce that our annual Fight Night event has raised over £180,000 to help #FightEB, making it DEBRA's most successful Fight Night in 15 years! Read more

DEBRA SLT members meet with Jennie Minto and Bob Dorris at Scottish Parliament

We took a further step on our government campaigning journey today (Wednesday 22nd November) with a meeting held at the Scottish parliament with Jennie Minto MSP for Argyll and Bute and Minister for Public Health and Women's Health in Scotland, and our meeting sponsor, Bob Dorris, MSP for Glasgow Maryhill and Springburn. Read more

DEBRA SLT members meet with Michael Gove and James Sunderland at Westminster

Today (Tuesday 21st November), DEBRA CEO, Tony Byrne, along with our Director of Research, Dr Sagair Hussain, and Director of Fundraising, Hugh Thompson, met with Michael Gove, MP for Surrey Heath, and James Sunderland, MP for Bracknell, at Westminster. Read more

DEBRA members attend lunch with HRH The Duchess of Edinburgh at St. James's Palace

This week it was our pleasure to host a small group of DEBRA members who have worked with us this year, at a lunchtime event attended by our Royal Patron, HRH The Duchess of Edinburgh GCVO. Read more

EB Awareness Week 2023 TV and radio interviews

This EB Awareness Week, our President Simon Weston CBE, Vice-President Graeme Souness and Andy Grist have all been playing their part to continue raising awareness of EB, by making appearances on national TV and radio. Read more

EB Awareness Week 2023

The 25th-31st of October is #EBAwarenessWeek, a week dedicated to increasing awareness of the painful genetic skin condition, epidermolysis bullosa (EB). Read more

DEBRA UK’s October events raise over £60,000 towards A Life Free of Pain appeal

In October, DEBRA UK hosted two major events, a Ladies Butterfly Lunch in Scotland, and a dinner with DEBRA UK Vice President Graeme Souness and Chef Richard Corrigan in London, raising a combined total of £60,000! Read more

DEBRA launches new members newsletter, EB Matters

EB Matters is DEBRA's newsletter for members, which will be published twice a year. It will feature recent news, research updates, information about our support services and ways you can get involved, member benefits, suggestions for managing life with EB, stories from our members, and more. Read more

DEBRA UK members play crucial role in securing the UK’s first approved EB drug treatment

It is clear from the feedback received from NICE that the patient testimony received during the approval process for Filsuvez was crucial to achieving a positive assessment and ultimately approval for this drug treatments to be made available to DEB and JEB patients aged 6 months+ in the UK. Read more

DEBRA Quarterly Update 2023 Q3

An update from our board of trustees, including key activities undertaken in the third quarter of 2023, and the progress we are making to #StopThePain of EB. Read more

DEBRA’s November Knitting Challenge

Join us in November for a month-long knitting challenge - knit every day throughout November to help stop the pain of EB. Read more

Itch severity and distress high amongst RDEB patients

A recent study, funded by DEBRA, has clarified that itch is a common symptom amongst patients with recessive dystrophic epidermolysis bullosa (RDEB). Read more

EB treatments question posed to the Scottish Government

Last Wednesday (4th October), Bob Dorris, MSP for Glasgow Maryhill and Springburn, kindly asked the Scottish Government what work is ongoing to support the development of new treatments for people living with epidermolysis bullosa (EB). Read more

DEBRA members meet MSs at the Senedd Cymru in Cardiff

DEBRA members from across Wales, joined DEBRA President, Simon Weston CBE, and DEBRA’s Director of Research, Dr Sagair Hussain in meeting members of the Senedd (MS). Read more

EB insights study

Discover the key findings from our EB insights study and the actions we will take to address these. Read more

Celebrating 25 years of supporting the EB community!

Yesterday the Send shop team were delighted to celebrate volunteer Brian’s 25th anniversary with DEBRA – an amazing achievement! Read more

DEBRA hosts reception within Scottish Parliament to raise awareness of EB

On Wednesday 13th September, DEBRA held an evening reception within the Scottish Parliament at Holyrood in Edinburgh. Read more

DEBRA Great Chef's Dinner hosted by Michel Roux Jr raises £102,900

On Monday 4th September 2023, our annual Great Chef's Dinner returned to The Langham, London. Read more