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Rare or Rarely Believed? Jane's Story

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Blog by Jane Green for Rare Diseases UK as part of Rare Disease Day 2023


Jane Green MBE, Chair and Founder of SEDSConnective a neurodivergent and symptomatic hypermobility (Ehlers-Danlos and Hypermobility Spectrum Disorders – HSD) voluntary social mobility charity.


Blog originally shared on 06th March 2023

By mhamer


I was diagnosed with what was known as EDS3, now known as hypermobile Ehlers-Danlos Syndrome (hEDS) in 2015, aged 53. It is a heritable and complex connective tissue disorder that affects the whole body and generally, hEDS seems to be more symptomatic in girls, women and non-binary people...


Read Jane's full blog for Rare Disease UK here:


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Let's Connect

We are the leading neurodivergent and symptomatic hypermobility charity.  We support those with or without a formal diagnosis of Autism, ADHD, dyspraxia, TS, dyslexia or dyscalculia. We also support those with or without a formal Ehlers-Danlos or Hypermobillity Spectrum Disorder. Also associated conditions like dysautonomia, POTS OI, MCAS, Gastrointestinal issues, fatigue, pain  along with their families, carers, friends and allied professionals.

Address: Planet House, North Heath Lane Industrial Estate, Horsham, West Sussex, RH12 5QE

Phone: 07376 973 688

Registered Charity No: 1199724

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