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RARE Talks Ehlers-Danlos syndrome.

The first video in our #RAREtalks Series features an interview with Katie and Esther, two members of our RARE team, both of whom have been diagnosed with Ehlers-Danlos syndrome.

Esther and I partnered up through RARE Youth Revolution to create this new series “RARE


We both have Ehlers-Danlos Syndrome (hEDS) and wanted to do something together

as part of Rare Youth Revolution. We came up with the idea of doing a video Q&A – where we created a series of questions together and could answer them from different ages and life stages.

Eddison filming RARE talks

Esther and I wanted to show what growing up with a Rare Disease can be like, and as 12- and 19-year-olds how this can impact our social life, education, hobbies and other aspects within our daily life. We had the honour of being able to be interviewed by the wonderful Eddison!

We are creating this new series with Rare Youth to cover a wide range

of rare diseases being shown from different life stages.

Written by Katie Callaghan and Esther Hula.

Be sure to keep an eye out for more from the #RAREtalks series by subscribing to the RARE youth revolution youtube channel HERE

To get involved with with our #RAREtalks series, you can email our youth coordinator James Brooks at


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