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About SEDSConnective

SEDSConnective is a voluntary and community-led charity. We provide support for individuals who have symptomatic hypermobility* and are neurodivergent**. We also provide support for their family, carers and allied professionals. From the beginning we have been expert-by-experience led, and have formed a thriving community with thousands of members worldwide. We actively advocate awareness and understanding as well as engaging in webinars, presentations, conferences and research globally.


*Or, if diagnosed: Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorder (HSD), pgJH (Paediatric Joint Hypermobility)
** For example: Autism, ADHD, Dyspraxia, Tourette syndrome, Dyscalculia, Dyslexia

Our Story

Our founder, Jane Green, was motivated to start SEDSConnective after facing years of mistrust in her conditions – she is disabled and neurodivergent, as well as a carer for her eldest child who is also neurodivergent. Due to the late diagnosis of her conditions, she faced challenges throughout her social life, professional life, and above all, in maintaining financial equity. Jane always felt that there must be others who had symptomatic hypermobility and were also neurodivergent. 
 

Jane founded SEDSConnective in 2018, in Sussex, UK. She started it as a voluntary charity without funding, with no particular connections, but with her huge passion to make a difference and ensure better outcomes for members. 

 

Today we are a charity with global reach and have thousands of members around the world. We have remained true to Jane's original aims and people have resonated with the ethos of a collective doing it for themselves. Wherever possible, we also connect with other charities and allied professionals. 

Our Mission

Our mission is to provide education, advocacy and community-building opportunities for neurodivergent individuals with symptomatic hypermobility, and their families and carers. We focus on promoting awareness, and enhancing the quality of life for our community in education, health, social care, employment, and travel accessibility. 


Our Vision

SEDSConnective envisions a world where neurodivergent individuals with symptomatic hypermobility, Ehlers-Danlos syndromes (EDS), Hypermobility Spectrum Disorders (HSD) or pgJH (Paediatric Joint Hypermobility), and associated conditions are understood, supported, and empowered to thrive with equality and equity. 

What We Do

  • ​SEDSConnective aims to provide education, spread awareness, and achieve recognition about the co-occurrence of symptomatic hypermobility and neurodivergence.

  • ​We aim to improve and actively support the lives of people with these issues. We also support their parents/carers and allied professionals.

  • There is a lack of training on these conditions for professionals in education, health and care, meaning that diagnosis is often delayed or not received at all. We provide information about diagnosis and hope to improve the education available.

  • We raise funds for members and co-produce activities with our members where possible. We actively support some members with specialised therapies and activities.

  • We are involved in the latest research and connect to allied professionals, and other charities. We spread awareness by speaking at conferences, producing publications and holding webinars.  

  • We acknowledge the challenges faced by childen and adults with these conditions. We provide support to adults who are disadvantaged financially due to their lack of employment options. 

  • We understand how both mental and physical health can be impacted by these conditions. We promote wellbeing for our members through our events and provide means for peer to peer communication. We aim to give back some joy to our members!


Our Founder

Jane Green, MBE

Jane Green MBE is the Chair and Founder of SEDSConnective. In 2023 she was awarded an MBE for services to neurodivergent people and those with related joint hypermobility conditions, including Ehlers-Danlos syndromes. 

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Our Patron and our Advisers 

Our Trustees

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