Community EngagementHealth ResourcesEDS
What support is available for people diagnosed with Ehlers-Danlos Syndrome?
This is Nicci, an active member of the Ehlers Danlos Syndrome (EDS) Community and passionate orthotist.
Here she discusses the EDS UK charity found at: https://www.ehlers-danlos.org/ who provide a range resources, community events and support groups for people with EDS.
Transcript (auto-generated)
This transcript was generated automatically and may contain errors.
Okay, what types of support are available for people with a diagnosis of EDS? So within the UK, you've got the UK Early Standards Centre for Charity. So they're absolutely amazing. They have a brilliant medical helpline with loads of different medical staff on there that can give you advice. I'm on there to help with any or all your questions. And they also run support groups throughout the whole of the UK. So they are face-to-face support groups. Currently within COVID there are Zoom support groups as well but they do a whole range where it is just communication so you've got somebody there to talk, they have other groups like art groups over Zoom, they have book groups over Zoom, there's a whole absolute array of different resources out there and they're an amazing amazing community and they've got, it's just so good to actually link up with other people with EDS as well.
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