Some may argue that social media is not the most social of activities, sitting behind a computer screen and engaging with faceless usernames. Whilst there may be an argument there, communities like the EB one, can really benefit from the connections that social media can facilitate. So if you have been afraid to embrace it or you are daunted by words like hashtag, retweets and status update, keep reading, to see if there is something in it for you.
Online EB community
The first stop for all those living with EB should be the EB Community on RareConnect by the rare disease patient organisations NORD and EURORDIS. This online space is designed to help people living with EB engage with others affected by it, all over the world. Once signed up, you can read other stories and join in conversations about everything from dressings, to treating a new-born, to where you are going on holidays. Unlike Facebook, where images of wounds are often removed for being too graphic, RareConnect provides a safe space to share even the most difficult aspects of EB. The fact that it also offers a translation service (provided by human translators), means that it is truly a global networking tool.
Facebook is currently the most popular social media tool. Once logged in, you enter a world of status updates, likes and shares, and here you will also find many EB support groups and DEBRA organisations, from all over the world. By clicking on the ‘thumbs up’ and liking them on Facebook, you will receive any updates they post. You can in turn share any updates you find interesting with your own Facebook friends. Have a look who is connected on the DEBRA Ireland Facebook page and which pages and groups we are following.
Twitter is home to a variety of people from the EB community and is most valuable as an information sharing tool. The 160 character limit on tweets means the news is short, snappy and very up-to-date. Here you will find a lot of advocates, researchers and medical groups sharing their news and chatting amongst themselves. You can search terms like ‘Epidermolysis Bullosa’ or ‘clinical trials’ to see the latest and, of course, start tweeting yourself at any time. The hashtag is used to group tweets on a particular topic, i.e. searching for #raredisease will bring up tweets with relevance to rare diseases. Check out the DEBRA Ireland twitter here.
If you prefer to receive your updates in digestible video format, then you should head over to YouTube. Here you will find a number of YouTube channels set up by members of the EB community. You can find TV shows on EB, news, interviews and research updates from all around the world. The DEBRA Ireland channel pulls together some of the best videos on EB, in addition to providing a home for DEBRA International’s own video productions. There is some great video content available so pop the popcorn and get lost in the web of YouTube!
The internet is full of bloggers, blogging about endless subjects. When it comes to the EB world, you will find blogs from researchers, charities and parents and families of EB patients. One fascinating blog is called EB Info World. Here you will find family stories, recipes and many helpful hints and tips from those living with EB. Over the years this blog has helped raise much needed awareness for EB. As blogs are run by individuals rather than hospitals or large organisations they allow you to gain invaluable personal insight into other people experiences
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