Our Members Connect Online events provide an opportunity for members aged 16+ to connect via Zoom. Come along and join in! Listen to others, share experiences, and chat about ideas covering a range of topics. Most importantly you can get to know other people in a relaxed, informal environment.

We're also excited to be expanding our online member events with a brand-new Research and Health webinar series!

These groups are a safe space and place to speak freely and to feel vulnerable.

DEBRA member

It’s really good to stay connected, even if we’ve never seen each other before.

DEBRA member

 

Watch this space, as we'll add more details here whenever a new Members Connect Online event is coming up.

 

Research and Health webinar series

We’re excited to have launched a brand-new series of online events, our Research and Health webinar series! The first few of these events will be hosted by DEBRA UK Director of Research Dr Sagair Hussain and feature a variety of science-based guest speakers. These sessions will be great opportunities to learn about different topics relating to EB, and have your questions answered by different experts.

Register for our next Research and Health webinar

The events are for our members aged 16+, but you don’t need to be a science whizz to follow along. These aren’t lectures – just a relaxed place to learn and hear about topics that matter to the EB community.

Don’t worry if you can’t make it on the day. A recording of the speaker and their presentation will be available to watch online, so you can still watch it later and see their answer to your question if you submit one!

 

Wednesday 2 October at 1pm – How breathing can be affected by EB

For our next event, we’ll be joined by Dr Rob Hynds, who is a Senior Research Fellow at University College London.

Register here

Join us to hear Dr Hynds explain how breathing can be affected by EB and the new treatments his team are working on to help.

Come along and join us if you’d like to learn more about...

• How different types of EB can affect breathing and the lungs.
• The cell and gene therapy that Dr Hynds works on, and how it can be used to help people with EB.
• The new treatments Dr Hynds’s team are working on to help people with EB with their breathing. 

There’ll be time for questions at the end of the event, or if there’s something you’re really keen to ask, you can submit questions in advance.

 

More about this event’s guest:

Rob trained as a cell biologist at Durham University, University College London (UCL) and The Francis Crick Institute before establishing the EpiCENTR research group at the Zayed Centre for Research into Rare Disease in Children at UCL in 2022. Rob’s team work closely with dermatologists and ear, nose and throat surgeons at Great Ormond Street Hospital to investigate types of EB that affect the respiratory system, and develop innovative therapies based on cutting-edge cell and gene therapy research.

 

If you missed our first webinar in September, on genetic testing and pregnancy in EB with Genetic Counsellor Kathryn Moore as our guest, you can watch the full recording below:

We’ll be adding more details on our upcoming Research and Health webinars soon, so keep an eye on this page. We’ve already got more fantastic guests lined up for the rest of our 2024 events, taking place each month until the end of the year and continuing into 2025.

The rest of this year’s events will be taking place on:

Wednesday 6 November at 1pm – with guest Dr Su Lwin, on the essentials of gene and cell therapies for EB.

Wednesday 4 December at 1pm – with guest Dr Emma Chambers, on the immune system and the skin.

 

Please note: These events are structured differently to our other online events, as we will be recording the guest speakers and presentations. For your online safety and security, you will not be able to use your camera or chat with other attendees.

 

Get in touch and join in

If you have questions before an event, would like to join or get help getting set up, please contact Karen Thackray on 01344 771961 (option 1) or via [email protected]. 

 

Getting set up before the meeting

• Please review our online event guidelines for more information on making time together enjoyable for everyone
• You can find out about joining a Zoom meeting by viewing this short video
• Check your webcam (video and sound) and speakers
• Please log on a bit early so we can start on time