What is the event?

This weekend offers the opportunity for around 10 to 15 adults living with more severe EB to get away from their normal routine, meet other people in similar circumstances and achieve new things. It’s a chance to enjoy an overnight break with support from DEBRA Member Services and EB clinical nurse specialists.

We hope the weekend will have a lot to offer.

  • Trial a greater level of independence
  • Enjoy a chance to make lasting memories and friendships
  • Get peer to peer support
  • Build confidence
  • Have a break from day-to-day circumstances
  • Give carers/family some respite

I felt relaxed and I enjoyed it. Now I am going to try new places.

DEBRA member after a previous Independence Weekend


Who is the event for?

DEBRA members aged 18+ who live with a severe form of EB and have physical day-to-day challenges that make going on a short break complicated.

Decisions on successful applicants will be made by DEBRA member services and EB nurses.  


What is planned?

Once the group has been finalised, attendees will be encouraged to have input with the planning of the weekend. Check-in at the hotel is from late afternoon on Friday. The event will not officially begin until we all meet for welcome drinks on Friday evening at 6:00pm. We will then share a meal together, perhaps have a quiz or games night, and talk about our plans for Saturday.

After breakfast at the hotel on Saturday, we will enjoy our planned activities (for example a theatre show or boat trip) that have been discussed and planned before the weekend. There may be several small groups depending on interests and what you have decided.

We will have dinner together in the evening. This will be dependent on interest and availability.

On Sunday we will relax and enjoy breakfast before saying our goodbyes. The weekend will officially end at 11.30. If you want to keep enjoying London, you are free to do so, but we will be unable to provide additional team support after 11:30.


Since I have been here, I have laughed so much. Having the nurses here I feel so comfortable. I love meeting new people.

DEBRA member at a previous Independence Weekend


Is the weekend EB friendly?

We do all we can to make the weekend as EB friendly as possible.

We will talk to you about your individual needs.

We try to keep the amount of walking and standing required to a minimum or make provision to make it easier to manage.

We try to make sure softer food options are available if required.

We have some disabled access rooms and rooms with adapted bathrooms (these need to be pre booked).

We research the activities and attractions for accessibility for our group, including wheelchair accessibility, but cannot guarantee full accessibility in every circumstance.


What if I live too far away to travel to London?

We change the location of the weekend away each year. Get in touch if you would be interested in a future event and what location is convenient for you.


What if I am worried about going away from home or joining the group?

We have a team of friendly staff (who you may well already know) who will do their best to help you feel comfortable.


How do I apply?

Please complete and return the application form linked below.


Download the application form


You can complete your application form and either email it to us, or print and post it to the following address:

The Capitol Building
RG12 8FZ


You can also contact our Member Services Team who will be happy to help you complete the form.

We need to hear from you by 9 September at the very latest and we will not allocate any places without an application.

If we have a lot of interest, priority will be given to those that will benefit the most from the weekend and the support we are offering. We will ask your Community Support Manager or EB nurse if they support your application. A panel made up of clinical nurse specialists, DEBRA Community Support Team and DEBRA Membership will jointly make decisions on which applications have been successful.


What happens after I apply?

We will let you know by the end of September if you have been successful in being allocated a place at the event.  

If successful:

  1. You will be required to complete and return essential pre-weekend documents. This will be sent out to you.
  2. We will ask you for your preferences and any suggestions of activities or attractions you would like to see in London.
  3. We will ask you to read and agree to our Terms and Conditions which includes important information.

If unsuccessful:

We will aim to suggest an alternative DEBRA event you may enjoy.


Event terms and conditions

Booking and attending this event is subject to DEBRA's terms and conditions.


Read our event T&Cs


Any further questions or queries?

Please contact our Membership Team on 01344 771961 (option 1) or email [email protected] if you have any questions or require an application form.

You can also talk to your Community Support Manager or EB clinical nurse specialist.

Booking for this event has now closed.