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DEBRA UK member events

DEBRA UK Members' Weekend reception is abuzz with people sitting around tables, adorned with blue and white checkered tablecloths and various drinks, under dim lighting, creating a lively indoor atmosphere. A large group of people, attending one of the DEBRA UK member events, is seated at round tables in a banquet hall with purple lighting, engaged in lively conversation and dining.

We know how important it is for members of the EB community to be able to connect with each other, to share experiences and tips, to form friendships, and to have some fun, all without having to explain what EB is.

This is why we’ve created a programme of national, regional and online events so that the EB community can connect locally and make vital connections with members in other parts of the country.

Our events also create an opportunity for members to connect with the DEBRA EB Community Support Team and to hear from experts in the field of EB healthcare.

Apart from our events specifically for members, sometimes we also also receive a limited number of free tickets for members to attend some of DEBRA’s major fundraising events.

Check our full list of member events

Find an event

We always plan our events based on what our members want and need. So, if there’s something you’d like to see more or less of, or if you have an idea for a new event, we’d love to hear your suggestions by filling out this form. 

In-person events for DEBRA UK members

Our members live all across the UK. As many don’t live near each other and smaller local events aren’t always practical, we host various regional events to connect members throughout the year, in addition to our Members’ Weekend national event.
Events have included an independence weekend specifically for members aged 18+ in London, and our recently launched Local Connects.
We also aim to connect with our members at other third-party events and exhibitions such as Naidex, the UK’s leading event for empowering and supporting disabled people.
Four people pose outdoors at a DEBRA UK member event; a woman in a wheelchair is at the center, with three men standing around her, all smiling at the camera.

DEBRA Members' Weekend

Members' Weekend is our national event, and enables members to connect with other people living with all types of EB. It provides an opportunity to share and learn from one another, have some fun, and connect in a safe place that caters for the needs of people living with EB.
Learn more
Two women sit at a café table, smiling and talking over drinks during one of DEBRA's Local Connect events.

Local Connects

Local Connect events are informal, in-person drop-ins hosted by DEBRA’s EB Community Support Team, designed to bring people living with EB together. These are held all across the UK.
Learn more
A plane, a London bus, and a range of classic motorbikes and cars shown outside at Brooklands Museum.

Members Connect: Brooklands Museum

Join us at Brooklands Museum for a fun, relaxed afternoon to meet other members of the EB community. You’ll also get to enjoy what this fantastic museum has to offer – explore classic vehicles, racing cars, historic aircraft, and the history of the world’s first purpose-built racetrack.
Learn more

Online events for DEBRA UK members

These events provide an opportunity to listen to others, to share tips and experiences, and to chat about ideas covering a range of topics related to EB. Most importantly, they also provide an opportunity to get to know other members of the EB community in a relaxed, informal environment.
A couple sits on a couch, smiling, holding a baby. The woman wears a striped sweater, the man a beige shirt and cap, and the baby a white outfit.

Member Pitstops

These free online events allow all members, both parents and carers as well as those living with EB, to connect via Zoom and share experiences and ideas about topics relevant to people living with all types of EB.
Learn more
A woman wearing headphones sits at a desk, smiling and looking at her laptop during an online webinar.

Health and Welfare webinars

Our Health and Welfare webinars are free online events. They provide an opportunity for all members to connect with others and learn about topics that matter to the EB community.
Learn more
David Williams from the DEBRA EB Community Support Team, hosting a men's group session at Members' Weekend 2024.

DEBRA Men’s Group

This monthly online group meeting is for male members aged 18+ and is a great place to share, listen, and just talk with other men who may have similar experiences to you.
Learn more
Dr Carina Graham in a lab coat and gloves sits on a stool in a laboratory, smiling. Positioned in front of a laminar flow hood filled with various lab equipment and supplies.

Research and Health webinars

These sessions, hosted by DEBRA UK Director of Research Dr Sagair Hussain, are great opportunities to learn about different topics relating to EB, and have your questions answered by experts.
Learn more
A corkboard with a note pinned on it reads "Know the Rules for Online Event Guidelines!

Online event guidelines

Our online events are run to help you connect with other members. To keep every session a welcoming, supportive and safe place, we ask that you follow our guidelines.
Learn more
Logo of DEBRA UK. The logo features blue butterfly icons and the organization's name. Underneath, the tagline reads "The Butterfly Skin Charity.
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