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Join us for a series of free online events for DEBRA members

Join us for a series of free online events for DEBRA members

Aware. Share. Prepare. | 6th-9th October 2021

Back by popular demand and bigger than last year, join us for a series of talks, workshops and social events for members and their families, suitable for different age groups and all types of EB.

These online events are a great opportunity to hear updates on EB research and healthcare,
access support, share experiences and stay connected.

In line with last year's series of events, we're continuing the theme of Aware. Share. Prepare.

  • Ask the experts at our online talks and Q&A sessions. From podiatry and diet to physiotherapy; from mindfulness to a session focussing on EBS.
  • Socialise with others with EB, family members, parents and carers.
  • Share experiences of living with EB and resources for accessing clinical services, work, education and more.
  • Meet our teams and find out more about research and the DEBRA services available including guidance, information and access to support.

 

About these events

We’re offering DEBRA UK members the chance to join online events with others across the four nations.

 

Schedule

Join us for a single session or the whole series, from your sofa or around the table with family and friends. All events will take place online using Zoom. Check out the schedule below and click on the event name to to learn more.

Get in touch via membership@debra.org.uk or phone 01344 771961 (Option 1) for any accessibility requirements.

Day Date Time Event Registration
Wednesday 6th October 11:00 - 12:00 Helping others understand EB
(with DEBRA Community Support Team)
Click to register
Wednesday 6th October 12:30 - 13:30 Parent Pitstop
(with DEBRA Community Support Team)
Click to register
Wednesday 6th October 19:00 - 20:00 This way to your holiday
(with DEBRA Holiday Homes Manager)
Click to register
Thursday 7th October 11:00 - 12:00 Let's talk food
(with EB dieticians)
Click to register
Thursday 7th October 15:00 - 16:00 Keep on moving
(with EB physiotherapists)
Click to register
Thursday 7th October 19:00 - 20:00 EBS today and beyond
(with panel of members)
Click to register
Friday 8th October 11:00 - 12:00 Social event: How to take good photos
(mobile phone edition)
Click to register
Friday 8th October 18:30 - 19:30 Mindfulness Based Living Course
(taster session)
Click to register
Saturday 9th October 11:00 - 12:00 Ask the foot expert
(with an EB podiatrist)
Click to register
Saturday 9th October 15:00 - 16:00 EB research update
(with DEBRA Director of Research)
Click to register
Saturday 9th October 19:00 - 20:15 Social event: Quiz night
(family friendly)
Click to register

Each event has a maximum capacity. Please cancel your registration if you cannot attend to allow others to join.

Disclaimer: Please note that event timings or presenter(s) may be subject to change due to any unforeseen circumstances or circumstances beyond our control. Upon registering for an event, you confirm that you have read and agree to our online event guidelines.

Some Member events may be recorded for future use. Recordings will be of the main speaker(s), which may include Members involved in any Q&As. Please turn off your camera and change your name to 'anonymous' if you do not wish to be identified. You will be informed at the start of an event if it is due to be recorded.

 

Help us spread the word

We will be posting about the events on social media, so be sure to follow us and then like, share and comment on our posts:

You can also download our flyer and pass it on to your family and friends who might want to join.

Online Member Events 2021 Flyer

Download the flyer

 

Session overviews

Wednesday, 6th October

11:00 - 12:00  |  Helping others understand EB (with DEBRA Community Support Team)

EB can be frustrating and difficult to explain in a way that others fully understand the impact it can have.

Whether you're the parent of a child starting school, talking to an employer, trying to access clinical services or applying for benefits, this event will provide you with the tips and resources you need to help others better understand the condition. 

Get involved and share your own tips and experiences of explaining EB that might help other members. We'll also give you an update on our revised 'I have EB' cards and talk about how and when to use them.

Register


12:30 - 13:30   |  Parent Pitstop 
(with DEBRA Community Support Team)

Come and meet with other parents of children living with EB in this second meeting of Parent Pitstop. Family members and carers directly  involved in a child’s EB care are also welcome.

Share your tips and advice, laughs and wobbles with other members who understand. We aim to offer a safe, non-judgemental space for you to talk about the things that are important to you.

In this particular event we will discuss starting school and managing EB with education.

Register


19:00 - 20:00  |  This way to your holiday 
(with DEBRA Holiday Homes Manager)

Did you know that each of our DEBRA Holiday Homes are located in 5-star rated holiday parks?

Whether you have already been to one of our homes or are thinking of planning a break away, join us to explore what you can enjoy at each of the parks and their surrounding locations.

Register

 


 

Thursday, 7th October

11:00 - 12:00  |  Let's talk food (with EB dieticians)

In this question and answer (Q&A) style event you will hear directly from EB dieticians on topics ranging from maintaining a balanced diet to tips for planning your meals.

Beneficial for all ages and people with any type of EB, learn more about the importance of Vitamin C, how to optimise with a sore mouth and throat and why we need it.

Let's talk food was one of the most highly attended and rated sessions in our 2020 event series, so be sure to register your place as soon as possible to avoid disappointment.

Register


15:00 - 16:00  |  Keep on moving 
(with EB physiotherapists)

Are you wondering what activities can help maintain your range of movement and how you can protect your skin?

In this 'ask the expert' event you'll have the opportunity to ask questions directly to EB physiotherapists and gain useful tips specifically tailored to people living with EB.

Come along in your normal clothes or workout attire and join in with some chair-based exercises with options for different abilities.

Register


19:00 - 20:00  |  EBS today and beyond 
(with panel of members)

Join in and hear from a panel of DEBRA members about their experiences and tips for managing EBS at different stages in life, including education, work and more.

In this open discussion format we will look at everyday challenges that you or a family member may have living with EBS so that we can understand your needs for the future.

Register

 


 

Friday, 8th October

11:00 - 12:00  |  Social event: How to take good photos (mobile phone edition)

Learn from the best in this photography workshop. Run by leading commercial photographer, Claire Wood (you may recognise her from one of our previous Members' Weekend events), you'll learn how to take good photos using your own mobile phone or tablet device.

This workshop will cover the basics of photography including explanations for different settings, framing and cropping images, tips for still life and portrait styles, the importance of lighting, resources for further learning and more.

Register


18:30 - 19:30  |  Mindfulness Based Living Course 
(taster session)

Looking after our mental wellbeing is important, and this has proven more so over the last 18 months. Come along to this mindfulness taster session and find out how you can participate in a longer 8-week Mindfulness Based Living Course (MBLC) available for people living with any type of EB and their close family members in the UK and Ireland.

The MBLC is recognised as an eight week course in the BAMBA UK Good Practice Guidelines developed by the Mindfulness Association.

Register

 


 

Saturday, 9th October

11:00 - 12:00  |  Ask the foot expert (with an EB podiatrist)

Specialised podiatry services are important for many people living with EB. At this 'ask the expert' event you'll hear directly from Tariq Khan (Consultant Podiatrist) for the latest updates in podiatry, as well as learn more about the foot care clinical practice guidelines for both you and your healthcare professionals.

We encourage you to get involved and take the opportunity to ask any EB specific questions relating to foot care during this session.

Register


15:00 - 16:00  |  EB research update 
(with DEBRA Director of Research)

What is EB research? What projects do we support and why? How has the COVID-19 pandemic impacted EB research?

All of these questions and more will be covered in this session presented by our Director of Research, Dr Sagair Hussain. Come along and ask your questions on the day or include them when you register.

Last year's EB research update was the most popular event in our series, so be sure to register your place as soon as possible to avoid disappointment.

Register


19:00 - 20:15  |  Social event: Quiz night 
(family friendly)

It’s quiz time! Put on your thinking caps and brush up on your general knowledge. This fun-filled event aims to make you laugh and, at a minimum, put a smile on your face. There will be prizes, so stay tuned for more information!

Register

 

Contact us via membership@debra.org.uk or phone 01344 771961 (Option 1) for more information, support or any accessibility requirements.