Community support

We have a closed member Facebook group Sussex Ehlers-Danlos Syndromes   

An open Facebook page for interested people or professionals at  EDS/HSD at SEDSHSD 

We’re on Twitter too @SEDSHSD.

Also on Instagram Sussex_EDS

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News & events


This is a picture of our May awareness month with a few of our members brave enough to be in camera. This meeting was shared with EDS UK Support in Sussex.​​​​​ We also have informal coffee meetings throughout the year and sometimes link up with the charity EDS UK Support meetings and for joint interest events.


Partner organisations and charities

SEDS is working with medical practitioners, clinical commissioning groups, sustainable transformation partnerships, education organisations and transport organisations (including trains, ferries, airports and airlines). We are lucky to have some amazing organisations and charities we either participate or partner with in Sussex and nationally.


Exciting news is that our activities are rolling out locally. Have a look under Activities and Hobbies.

Upcoming Events
Sussex EDS/HSD First Aid Training
Drama Hut, Warden Park Academy
SEDS Meet with Personal Safety Talk and Presentation
Horsham Park Barn
SEDS support meeting
The Haven Centre
SEDS Quiz and Curry Night 8th November (1)
East Grinstead Rugby Football Club
SEDS Quiz and Curry Night 8th November
East Grinstead Rugby Football Club