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Members' Weekend 2022

We are looking forward to seeing as many members and families as possible at our Members’ Weekend in 2022.  This will be the first time we will have met in person at an event since 2019. We have missed the opportunity to get together and hope that the pandemic does not affect our plans. Please be reassured that the event will run in line with government guidelines. If for any reason it does not go ahead, any event payments you have made to us will be refunded.  

In the meantime, this web page will be updated regularly with information and announcements including details about the event such as speakers, workshops, activities and any health and safety requirements based on government guidance.

Join us at our Members’ Weekend 2022 on the 14th and 15th May at Wokefield Estate, Reading, Berkshire.

What to expect

Our Greatest Show Circus theme will acknowledge some of the demands that many Members juggle in life when living with EB.

Members have told us how useful and enjoyable it is to attend Members’ Weekend,  it connects them with other Members living with EB, helps people who may feel isolated and gives an opportunity to share and learn from one another as well as meet community support, healthcare and research leads and have fun.

  • Something for everyone – whatever your age or the type of EB that you live with 
  • Attend for one day or the whole weekend
  • Saturday - presentations, practical workshops, information stands, fun activities and plenty of food!
  • Saturday evening - drinks reception, dinner, disco, overnight accommodation and breakfast
  • On Sunday you will be free to enjoy the many lovely places nearby, for example, Wellington Country Park, Windsor or Henley-on-Thames.

If you would like to be involved with the theme of the weekend for example by providing entertainment, sharing a story or suggesting topics for the workshops please get in touch. Let’s work together and tackle how we juggle the demands of life.

Who can attend?

To attend the event you must be a DEBRA Member. If you are not yet a Member but would like to come to the event, please click here to find out more and download a Membership application form. Alternatively, request a form to be posted to you by calling the Membership Team on 01344 771961 (option 1).

Please note that any number of Members are welcome to attend the Members’ Day which is held during the day on Saturday (subject to venue capacity). However, a maximum number applies to booking the optional Saturday evening event, which includes dinner and overnight accommodation. For families wishing to apply for the evening event a family member is defined as a parent, guardian or sibling under the age of 18.

How to book 

Please complete the application pack below.  The presentations and activities on Saturday are free. A £37.50 contribution (no charge for children under 18) is required to secure your booking for the evening meal and overnight accommodation (subject to eligibility criteria). Please find the terms and conditions of booking here.

Extended Friday Night Grant Scheme

This is available, on a limited basis, to allow Members who wish to attend the Members’ Weekend from the start time on Saturday morning but have a long distance to travel and who may require additional time for dressing changes.  See application pack below for further details. Click here to find out more, and click here to view the grants terms and conditions.

If you have any questions, need documents posting or help with completing any of the forms, please contact the Membership Team on 01344 771961 (option 1) or email

Completed forms should be returned to us by email or post by 17th February 2022.

MEMBERS' WEEKEND application pack

Extended friday night stay grant application pack

If you have not attended a Members' Weekend before and would like to know more, just give us a call and we can give you the details.