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EDS Resources & Links

We have compiled what we see as the more trustworthy and helpful resources you can explore for further information.

Support Groups

Join the private Irish EDS Support to reach our community for any questions, including healthcare or schools in an Irish context.

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The EDS (Ehlers Danlos Syndrome) UK group has 10x more members as it is serving the whole of the UK and can be helpful for lifestyle, supports, physio, mental health but processes for the NHS (vs. HSE) may be different.

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Do you have EDS but you're still maintaining an active lifestyle?  Join EDS Athletes.

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Note: There is no official Instagram or TikTok community because they are too limited in moderation capabilities and don't keep the EDS communities safe.

Other official EDS websites

The Ehlers Danlos Society is the authoritative worldwide organisation.  It has more technical advice, great overviews of research being conducted, and is somewhat US-focused.

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The EDS UK site has a lot of great links to webinars on EDS across a range of topics- health, mental health, school, pregnancy.

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The hypermobility syndromes association - have great guides on managing different symptoms

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Move Well Daily EDS

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How to manage POTS (UK)

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Ehlers Danlos News has multiple articles on health

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Prefer podcasts or webinars?  Bendy Bodies have a series of podcasts on different topics.

Consultants

Please use our Irish EDS Support Facebook group to share which county you live in and ask which consultants are recommended near you.

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As EDS isn't known by all consultants / health professionals, we strongly recommend that you ask the EDS community who you should see who is known to be EDS-aware.  People who get referred to a random local consultant tend to report mixed outcomes with their appointments and treatment.

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Books

The following books are recommended:

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​The following videos by doctors do a great job in explaining common aspects of EDS (without being too technical):

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​Want to hear from EDS advocates on Instagram:

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