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SEDSConnective

@sedsconnective.org
1.9K followers 182 following 849 posts

The 1st charity for Hypermobility and Neurodivergence est.2018 Chair @JGjanegreenmbe.bsky.social Patrons: Dr Eccles Dr Spiritos Web: www.sedsconnective.org Link: linktr.ee/SEDSConnective

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SEDSConnective @sedsconnective.org · 16h
Are you passionate about making a difference for neurodivergent & hypermobile people and the parents and carers who support them? - Make a meaningful difference - Bring your skills, time & enthusiasm Email Recruitment@sedsconnective.org to find out more & apply.
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SEDSConnective @sedsconnective.org · 28/09/2026
Survey on how heatwaves affect disabled people . Links in the comments #SEDSConnective #Hypermobility #Neurodivergence
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SEDSConnective @sedsconnective.org · 27/09/2026
Stability Over Flexibility 🧱 But hypermobile people can also become very stiff and rigid It’s about a safety, stability, strength, control and maintaining useful mobility 🧷 #SEDSConnective #Hypermobility #Neurodivergence
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SEDSConnective @sedsconnective.org · 24/09/2026
Language matters and evolves. Our terminology card sets out short plain definitions of the terms we use, from neurodivergence and neurodivergent through to neuro-affirmative. We connect and neuro-affirmative language recognises hypermobility and neurodivergence as interconnected aspects
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SEDSConnective @sedsconnective.org · 22/09/2026
❓Are you a parent of autistic children or adults with co-occurring intellectual disabilities or learning disabilities. The BEOND survey - is open f Online or via post. EVERY family receives a personalised feedback report after survey. 👉 more here : www.cerebranetwork.com/beond
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SEDSConnective @sedsconnective.org · 21/09/2026
We would love to but sadly not there :(
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SEDSConnective @sedsconnective.org · 21/09/2026
Understanding rejection sensitivity as part of a broader neurodivergent experience can help individuals feel less alone and more supported. Read more here - sedsconnective.org/what-is-rsd-reje…
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SEDSConnective @sedsconnective.org · 19/09/2026
Did you know there is more under the skin to eczema? Inflammation, anxiety, pain, brain fog and fatigue can all be part of the picture. We are SEDSConnective, the hypermobility neurodivergence charity. #EczemaAwarenessWeek #Hypermobility #Neurodivergence
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Reposted by SEDSConnective
SEDSConnective @sedsconnective.org · 17/09/2026
We exist! Hypermobility and Neurodivergence does not disappear by saying it does not exist www.sedsconnective.org the community charity formed from unmet needs changing systems and laying the path for others to follow #hypermobility #neurodivergence
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SEDSConnective @sedsconnective.org · 18/09/2026
Acceptance and reciprocity ?
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SEDSConnective @sedsconnective.org · 17/09/2026
We exist! Hypermobility and Neurodivergence does not disappear by saying it does not exist www.sedsconnective.org the community charity formed from unmet needs changing systems and laying the path for others to follow #hypermobility #neurodivergence
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SEDSConnective @sedsconnective.org · 16/09/2026
🪣 Some days you wake up and the bucket is already filling. Heart pounding. Dizzy. Exhausted. Anxious. Then the day begins and the little things start adding up. Dysautonomia. Hypermobility. Neurodivergence. You don't always get to start the day with an empty bucket.
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SEDSConnective @sedsconnective.org · 13/09/2026
‘If you can’t connect the issues think connective tissues’ Yes ✔️
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SEDSConnective @sedsconnective.org · 10/09/2026
SEDSConnective has joined 50+ organisations calling on the Prime Minister to act on disabled children’s social care. The recommendations are here. We’ve signed the open letter. Will you back the call to sign? ⬇️
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Reposted by SEDSConnective
MQ Mental Health Research @mqmentalhealth.bsky.social · 10/09/2026
Every day, 800 people die by suicide, making it one of the leading causes of death worldwide. Prof. O'Connor discusses the significance of World Suicide Prevention Day, and how we can all work together to make a difference. youtu.be/UnIzQiXFMFg
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SEDSConnective @sedsconnective.org · 09/09/2026
Interactive charities ebook to find grants for children and young people with disabilities and long term health conditions. Link: ltv.services/charity-ebook #health
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SEDSConnective @sedsconnective.org · 09/09/2026
New report by public health Wales Why gender matters children health inequalities 🏴󠁧󠁢󠁷󠁬󠁳󠁿https://phwwhocc.co.uk/resources/why-gender-matters-child-poverty-and-health-inequalities/
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SEDSConnective @sedsconnective.org · 08/09/2026
www.epicresearch.org/articles/neu...
epicresearch.org
Neurodivergence Linked to Higher Rates of Connective Tissue Disorders
Compared with patients who had no neurodevelopmental diagnosis, patients with autism (ASD), ADHD, or both were more likely to have a connective tissue disorder diagnosis.
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SEDSConnective @sedsconnective.org · 08/09/2026
Body and head are connected. Let’s stop the silos even if you are affected or perhaps realise this. We’re the 1st charity for hypermobility neurodivergence (2018)
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SEDSConnective @sedsconnective.org · 07/09/2026
Can you support our call for an All-Party Parliamentary Group (APPG) for Hypermobility & Neurodivergence ? BodyBrain 🙏2 minute form Please scan the QR code or use the LINK: forms.cloud.microsoft/e/8p0krHQJD8 #Hypermobility #Neurodivergence
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SEDSConnective @sedsconnective.org · 05/09/2026
📢The time to act is NOW. For too many years, people living with hypermobility & neurodivergence have been disbelieved & not counted. We’ve been adding our voices 4 global call for change. It’s #TimeToLead #TimeToAct community charity #ncdalliance
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SEDSConnective @sedsconnective.org · 04/09/2026
Are you over 65 ? older age study on community, connection and loneliness email l.m.lane@herts.ac.uk or laura.lane@ext.uni.l It consists of an interview face to face, online in the UK and Luxembourg . Ethics approved. @uni.lu @UniofHarts
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SEDSConnective @sedsconnective.org · 02/09/2026
Who is not being counted ? Body and brain hidden in plain sight ©️ Years of appointments. A diagnosis denied, missed or misattributed. People centred means the whole person. Are we being counted? Time for action actonncds.org #ActOnNCDs #LeadOnNCDs #Hypermobility
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SEDSConnective @sedsconnective.org · 01/09/2026
Here is a cost nobody counts. A person with #hypermobility #neurodivergence moves between services for years. Getting the whole person right costs less than getting the parts wrong for a decade. #ActOnNCDs #LeadOnNCDs #sedsconnective CC BY-SA 4.0
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SEDSConnective @sedsconnective.org · 31/08/2026
Global Week for Action on NCDs. Leadership is the theme #Hypermobility and #neurodivergence are interconnected whole person conditions Breaking down siloes is not an abstraction. CC BY-SA 4.0 #LeadOnNCDs #ActonNCDs
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SEDSConnective @sedsconnective.org · 31/08/2026
Next support meeting for chit chat natter is Where: The Charis Centre, West Green, Drive, Crawley, RH11 7EL Friday 4th September 12.30- 2.30 #SEDSConnective RH11 7EL
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SEDSConnective @sedsconnective.org · 30/08/2026
#Throwback 2018 Us & BBC start of SEDSConnective & the #BBC. hypermobility (common types) are not rare, just rarely diagnosed, neurodivergence (ADHD Autism Dyspraxia Dyslexia TS ) common to #SEDSConnective #hypermobility #neurodivergence #EDS
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SEDSConnective @sedsconnective.org · 27/08/2026
DCD or Dyspraxia ? Participants children (7–16 years) with DCD/Dyspraxia! The study involves: read more below
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SEDSConnective @sedsconnective.org · 25/08/2026
Clinicians: In UK who can assess people for (EDS or HSD ). Confidential online interviews exploring diagnostic process. It involves a semi-structured interview Experience in autism welcomed. see flyer for more details
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SEDSConnective @sedsconnective.org · 22/08/2026
❓Are you a parent of autistic children or adults with co-occurring intellectual disabilities or learning disabilities. The BEOND survey - is open f Online or via post. EVERY family receives a personalised feedback report after survey. 👉 more here : www.cerebranetwork.com/beond
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SEDSConnective @sedsconnective.org · 21/08/2026
SEDSConnective next Brighton support meeting 28th August 11am - 12:30pm The Southdown Offices, 35 New England st, Brighton, BN1 4GQ We are first charity for hypermobility and neurodivergence. You don’t need a diagnosis to join us. Join us at www.sedsconnective.org
sedsconnective.org
SEDs Home - SEDSConnective
You ARE NOT ALONE The first charity (est. 2018) for symptomatic hypermobility and neurodivergence Peer support, trusted information and advocacy for change. Become a Member DONATION CAMPAIGNS You ARE ...
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SEDSConnective @sedsconnective.org · 20/08/2026
DCD or Dyspraxia ? Participants children (7–16 years) with DCD/Dyspraxia! The study involves: read more below
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SEDSConnective @sedsconnective.org · 18/08/2026
Clinicians: In UK who can assess people for (EDS or HSD ). Confidential online interviews exploring diagnostic process. It involves a semi-structured interview Experience in autism welcomed. see flyer for more details
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SEDSConnective @sedsconnective.org · 16/08/2026
There are 15 workshops on the Timms PIP Review: so register your interest now as deadline is 21st August. See more on link. www.gov.uk/government/p...
gov.uk
Timms Review: register your interest in a shaping recommendations workshop
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SEDSConnective @sedsconnective.org · 16/08/2026
SEDSCONNECTIVE next meeting on 27th August 2026 7pm to 8.30 We’re the first charity for hypermobility and neurodivergence and you don’t need a diagnosis. Parents carers welcome Join us at www.sedsconnective.org #Neurodivergence #Hypermobility
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SEDSConnective @sedsconnective.org · 15/08/2026
📢🔬 PsychMSc research study at Uni of Surrey! 1. Those with hypermobility (and EDS) who are experiencing chronic pain 2. Those who experience chronic pain but do not have hypermobility 3. Those with hypermobility who do not experience chronic pain see more in comments or flyer
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SEDSConnective @sedsconnective.org · 15/08/2026
We are greatly saddened to hear of the passing of Professor Jason Arday. Our thoughts and condolences are with his family, friends, colleagues and loved ones at this difficult time. May he rest in peace.
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SEDSConnective @sedsconnective.org · 12/08/2026
Our next monthly support meeting: Date: Friday 14th August Time: 12:30-2pm Where: The Charis Centre, Crawley, RH11 7EL We are the user led charity for hypermobility and neurodivergence & more! You do not need a diagnosis to join us. Email general@sedsconnective.org for more info sedsconnective.org
sedsconnective.org
SEDs Home - SEDSConnective
You ARE NOT ALONE The first charity (est. 2018) for symptomatic hypermobility and neurodivergence Peer support, trusted information and advocacy for change. Become a Member DONATION CAMPAIGNS You ARE ...
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SEDSConnective @sedsconnective.org · 28/07/2026
We are proud to announce that our Charity SEDSConnective, working at the intersection of symptomatic hypermobility and neurodivergence, has become a member of the WHO Disability Health Equity Network hosted by the World Health Organization! #hypermobility #neurodivergence #SEDSConnective
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SEDSConnective @sedsconnective.org · 26/07/2026
Something out of the ordinary... We know something We can't explain, not yet.... Tuesday.... #SEDSConnective #Hypermobility #Neurodivergence
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SEDSConnective @sedsconnective.org · 25/07/2026
Something out of the ordinary is coming … Tuesday .. #sedsconnective #hypermobility #neurodivergence
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SEDSConnective @sedsconnective.org · 23/07/2026
Are you hypermobile , flexible or have chronic pain? NO formal diagnosis needed Email researcher Shy (Shyamalie Satkunanandan), ss06276@surrey.ac.uk, for info or to take part
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SEDSConnective @sedsconnective.org · 22/07/2026
🎉 8 years of SEDSConnective! Thank you to everyone who has been part of the journey. Our Trustees, volunteers, members, supporters and patrons, you are the heart of it all. Here is to 8 more. You are not alone! #Hypermobility #Neurodivergence #SEDSConnective
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SEDSConnective @sedsconnective.org · 20/07/2026
We are delighted that SEDSConnective has joined as a member of the NCD Alliance Network @ncdalliance #sedsconnective #health
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SEDSConnective @sedsconnective.org · 20/07/2026
Today, we’re celebrating 8 incredible years of SEDSconnective!🎂 8 years ago SEDSConnective started with one simple goal: to get people with symptomatic hypermobility and neurodivergence seen and heard. #hypermobility #neurodivergence #sedsconnective #chronicpain #eds
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SEDSConnective @sedsconnective.org · 20/07/2026
You're not alone www.sedsconnective.org #Hypermobility #Neurodivergence #sedsconnective
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SEDSConnective @sedsconnective.org · 14/07/2026
Participants 7–16 years with DCD / Dyspraxia for (VR) balance training Fun VR games/activities at home, either 2 - 3 lab visits across 6 - 11 weeks Up to £125 in shopping vouchers email (Samantha.Chye@brunel.ac.uk) or forms.cloud.microsoft/e/cMwK66WNhf
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SEDSConnective @sedsconnective.org · 14/07/2026
Participants 7–16 years with DCD / Dyspraxia for (VR) balance training Fun VR games/activities at home, either 2 - 3 lab visits across 6 - 11 weeks Up to £125 in shopping vouchers email (Samantha.Chye@brunel.ac.uk) or forms.cloud.microsoft/e/cMwK66WNhf
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SEDSConnective @sedsconnective.org · 11/07/2026
July 11th 2025 Anniversary of the rsom invisible impact of covid19 symptoms on hypermobility and neurodivergence Thanks to our chair Jane Green MBE planning organising and giving our volunteers the chance to shine at the event and
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SEDSConnective @sedsconnective.org · 10/07/2026
For many years, the connection between #hypermobility and #neurodivergence was misunderstood or dismissed. Today, we are working to change that - helping individuals, families, professionals, and services better understand the strong links between physical and mental wellbeing! #SEDSConnective
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