Sign in

SEDSConnective

@sedsconnective.org
1.9K followers 182 following 850 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

PostsRepliesMedia
SEDSConnective @sedsconnective.org · 10h
October is about more than one condition or diagnosis At SEDSConnective, we’ve always been connecting them Because people don't experience their health in neat little boxes. #hypermobility #neurodivergence
010
SEDSConnective @sedsconnective.org · 30/09/2026
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.
001
SEDSConnective @sedsconnective.org · 28/09/2026
Standard: www.surveymonkey.com/r/6GQZ2NW BSL: www.surveymonkey.com/r/X2XTCSW Easy Read: www.surveymonkey.com/r/X2MVLQ6
000
SEDSConnective @sedsconnective.org · 28/09/2026
Survey on how heatwaves affect disabled people . Links in the comments #SEDSConnective #Hypermobility #Neurodivergence
131
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
021
SEDSConnective @sedsconnective.org · 24/09/2026
of the whole person. Not two separate things. One person but not all are symptomatic. Free to use and share. #Hypermobility #Neurodivergence #neurodivergent #EDS #ADHD #Autism #Connective #neurodiverse #neurodiversity #NeuroAffirmative #neuroaffirmative #BodyBrain
000
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
144
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
000
SEDSConnective @sedsconnective.org · 21/09/2026
We would love to but sadly not there :(
000
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…
030
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
011
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
032
SEDSConnective @sedsconnective.org · 18/09/2026
Connections brain body body brain mental physical.
000
SEDSConnective @sedsconnective.org · 18/09/2026
So key to understand from an early age the differences
000
SEDSConnective @sedsconnective.org · 18/09/2026
This sounds like the autism peer support project funded by NHS England much needed !
000
SEDSConnective @sedsconnective.org · 18/09/2026
Acceptance and reciprocity ?
000
SEDSConnective @sedsconnective.org · 18/09/2026
Congratulations to him hopefully it will lead to more revelations
010
SEDSConnective @sedsconnective.org · 18/09/2026
And our health ..we exist
000
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
032
SEDSConnective @sedsconnective.org · 16/09/2026
We are the first charity for symptomatic hypermobility and neurodivergence www.sedsconnective.org
sedsconnective.org
SEDs Home - SEDSConnective
The first charity (est. 2018) for symptomatic hypermobility and neurodivergence.
011
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.
101
SEDSConnective @sedsconnective.org · 13/09/2026
‘If you can’t connect the issues think connective tissues’ Yes ✔️
011
SEDSConnective @sedsconnective.org · 10/09/2026
@dcpcampaign.bsky.social @andyburnham.bsky.social
000
SEDSConnective @sedsconnective.org · 10/09/2026
We’ve signed the open letter. Will you back the call too? disabledchildrenspartnership.org.uk/social_care_... support.disabledchildrenspartnership.org.uk/en-gb/DCP_op... ?utm_source=partner&utm_medium=mixed&utm_campaign=Open+Letter&utm_id=Social+care #DisabledChildrenCantWait
disabledchildrenspartnership.org.uk
An open letter to the Prime Minister on disabled children's social care - Disabled Children's Partnership
120
SEDSConnective @sedsconnective.org · 10/09/2026
'SEDSConnective signed because too many children with hypermobility and neurodivergence are overlooked by social care, health and education affecting them and their families as their carers' - Jane Green MBE Chair SEDSConnective.
110
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? ⬇️
130
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
141
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
000
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/
000
SEDSConnective @sedsconnective.org · 08/09/2026
Autistic dx 4 x more likely connective tissue disorders than HCTD AuDHD 5.4 more likely supports earlier research Csecs 2022
031
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.
132
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)
174
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
024
SEDSConnective @sedsconnective.org · 05/09/2026
020
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
110
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
011
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
010
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
052
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
020
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
010
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
021
SEDSConnective @sedsconnective.org · 27/08/2026
Fun VR balance games and activities at home Flexible participation: choose either 2 - 3 lab visits across 6 - 11 weeks Up to £125 in shopping vouchers for taking part (depending on the number of lab visits completed) Families will receive Movement Assessment Battery for Children (MABC-3) assessm
000
SEDSConnective @sedsconnective.org · 27/08/2026
DCD or Dyspraxia ? Participants children (7–16 years) with DCD/Dyspraxia! The study involves: read more below
100
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
031
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
011
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 ...
010
SEDSConnective @sedsconnective.org · 20/08/2026
Fun VR balance games and activities at home Flexible participation: choose either 2 - 3 lab visits across 6 - 11 weeks Up to £125 in shopping vouchers for taking part (depending on the number of lab visits completed) Families will receive Movement Assessment Battery for Children (MABC-3) assessm
000
SEDSConnective @sedsconnective.org · 20/08/2026
DCD or Dyspraxia ? Participants children (7–16 years) with DCD/Dyspraxia! The study involves: read more below
100
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
010
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
010