To keep being informed about EDS :
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To get support and get in contact with others with EDS:
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https://www.ehlers-danlos.org/
https://www.annabelleschallenge.org/
http://breaking-down-barriers.org.uk/project/eds-uk/
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To discuss issues related to managing day-to-day aspects of EDS :
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It might be more appropriate to consult specialists such as rheumatologists, physiotherapists or paediatricians.
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To get diagnosed in expert centers :
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London North West University Healthcare - Ehlers Danlos Syndrome National Diagnostic Service
https://www.lnwh.nhs.uk/services/a-z-services/e/ehlers-danlos-syndrome-national-diagnostic-service/
Provide diagnostic service for adults and children referred by NHS consultants with suspected complex EDS.
The Sheffield Children’s Hospital - Ehlers-Danlos Syndrome (EDS) National Diagnostic Service Provide diagnostic service for adults and children with suspected complex EDS
https://www.sheffieldchildrens.nhs.uk/services/clinical-genetics/ehlers-danlos-syndrome/
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To potentially get involved in a clinical trial :
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