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.

The event, which took place at St. James’s Palace, was an opportunity for members to connect with each other, to share experiences, and to meet with our Royal Patron and share with her some of the ways that they have been involved with DEBRA this year, and how DEBRA has supported them.

DEBRA CEO, Tony Byrne shakes hands with HRH the Duchess of Edinburgh,

Commenting on the event, DEBRA UK CEO, Tony Byrne said:

It was wonderful to see the smiling faces of our members and to witness how much time our Royal Patron spent talking with them and listening intently to what they had to say.

There are many highlights of the day but the one that stands out for me was when one of our younger members asked our Royal Patron for her autograph as she was leaving, she duly signed her own place card and gave it to him. In years to come I hope that place card will bring back many happy memories of the day for that young man.

I would like to pass on my thanks to our Royal Patron, both for her time yesterday and for her ongoing support of the charity and our mission to stop the pain of EB, our members and trustees who attended yesterday, and to the DEBRA team who helped organise the event.

Members meet HRH the Duchess of Edinburgh at Palace visit

Ten year old Ben Wells (photographed above right), who lives with EB Simplex, attended the visit and said:

I loved being invited to the palace, it was so special and such an amazing place. We saw the King’s throne and photos of Queen Elizabeth. The day I went to the palace is a day I’ll never forget and I can’t wait for Member’s Weekend to see all my new friends again.

Thank you to everyone who works and cares about EB. I hope there will be a cure for EB some day.

Find out more about how to get involved with DEBRA.