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EB Connect: Your online EB community

EB Connect is a free, private online social platform for the global epidermolysis bullosa (EB) community to connect with others.
We are pleased to be able to share with you EB Connect – a free, private online social collaboration platform for the global epidermolysis bullosa (EB) community. It’s a place for peer-to-peer connection, where you can connect with other people living with EB from all around the world.
You can share experiences, make friends, find other members of the community using EB Connect’s interactive map, or just have a chat. You can also ask questions that you might not want to ask a healthcare professional, and find useful tips and advice from other people living with EB.
As EB Connect is a social network for EB patients and families, it’s open to anyone affected by EB. There are groups for all types of EB and different age groups.
DEBRA UK EB Connect page
There’s also a page dedicated to DEBRA UK. It’s a page where you can not only connect with people from around the world, but also the best group for you to get in touch with other members of the EB community in the UK.
Join EB Connect for free
Our UK page is newer than some of the others. To increase the opportunities to make vital connections on the platform, it would be great to have as many members of the DEBRA UK membership and wider EB community signed up as possible. Please do tell other people you know with, or affected by EB, about EB Connect.
Using EB Connect
Don’t wait to be active on the platform either. Posting is the best way to engage with others and start making connections with more people in the community.
There are lots of ways to connect with others. For instance, the Live Feed – an activity hub to ask questions, share updates about what you’re up to, helpful tips, photos, ideas that inspire you, and more. You could post and chat about all sorts of topics, such as sharing top tips on managing EB in the heat, where to buy good EB-friendly footwear, or favourite recipes.
There are also Forums – a space for more in-depth conversations and discussions on topics that are important to you.
You can find more information about EB Connect’s features and how to use them on our DEBRA UK page.
We hope that you’ll find this platform to be a useful resource to help you connect with the wider EB community. Please do let us know what you think of EB Connect by emailing feedback@debra.org.uk