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Members' Weekend and AGM 2020

Members' Weekend and AGM 2020

We are sorry to announce that, due to the ongoing COVID-19 crisis, our Members' Weekend has been cancelled. Whilst this has been a difficult decision to make, the safety and well-being of the EB community and DEBRA staff and volunteers is of paramount importance. For the same reasons, there will be no AGM held this year. We will be in contact from 16th March 2020 onwards to offer refunds of deposits made and with further information about the AGM.

Thank you for your understanding and support on these matters and please continue to follow all public health advice with regards to COVID-19. We have summarised the latest advice here. 

Please click to read a letter regarding the cancellation from Chair of Trustees, Jim Irvine.

The following information and programme details are what you can expect from future Members' Weekends:


Special Programme Announcements

We have listened to your feedback and are pleased to announce some of the exciting things we have planned.

Workshops & discussion sessions – relaxed, informative and welcoming sessions with experts and guest speakers on a range of topics such as Applying for Benefits, Education from nursery to university, Dressings, Clothing for comfort, Confidence building and networking, Relaxation, well-being and mindfulness, Sleep, Healthy Diet, Talk and Share for Dads and a Teen open discussion group.

 Activities - Circus entertainment and activities for all ages throughout the day including a Circus skills workshop, Segway for all plus Youth Segway Challenge, Outdoor large garden activities and the DEBRA Stroll, a dance session led by an EB Member leading to a performance for all attending at the evening reception.

Open Q & A and Panel sessions – focusing on Research, Clinical and Member Peer Support including a Research update, the Glove project, brief summary of the EB World Congress 2020 and an Open Q & A session (bring your questions).

 DEBRA Fun Zone, Pre-book a space at the crèche –  adults can use this time to attend workshops and presentations. Children will enjoy a variety of circus-themed activities for differing age groups. This needs to be pre-booked so check our website for updates on how to book. Click here to learn more about the service.

What to expect

This year the theme is the 'Greatest Show Circus’, acknowledging the demands that many Members juggle in life when living with EB. 

  • Saturday Daytime - Enjoy presentations, the AGM, practical workshops, information stands, fun activities and plenty of food!
  • Saturday Evening (optional) - Enjoy our drinks reception, dinner, and disco – with overnight accommodation and breakfast
  • Sunday Daytime - You are free to explore the lovely places nearby, for example, Windsor or Wellington Country Park

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.

Please note that any number of Members are welcome to attend the Members’ Day and AGM 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.

Extended Friday Night Grant Scheme

This is available, on a limited basis, to allow Members who wish to attend the Annual Members’ Weekend & AGM 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. To find out more, click here.

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

Extended friday night stay grant application pack

Watch the video below or click here to see what happened at Members’ Weekend 2019 and view the presentations.


See our other Member Events