Rare or Rarely Diagnosed: Ehlers-Danlos Syndromes, Hypermobility, and Neurodivergence

Image of hands holding a board saying Rare Disease Day . hEDS is not rare just rarely diagnosed

29th February 2026 is #RareDiseaseDay a day to raise awareness about conditions often labelled rare like Ehlers-Danlos syndromes (EDS) and closely related (HSD) hypermobility.

How many types of EDS are rare?

Twelve types of EDS are formally classified as rare affecting fewer than one in two thousand people according to the 2021 UK government publication, in fact the Classical EDS and Vascular EDS are around 1/20,00 and 1/50,000.

Hypermobility EDS ( hEDS) and HSD (13th) cannot be genetically tested but diagnosed by clinical assessment. It is possible around 1/500 making it not rare and possibly with more training much less. Diagnosis matters. Many people go undiagnosed making these conditions not truly rare but rarely recognised.

As Professor Rodney Grahame, who was the leading expert in hypermobility and connective tissue disorders, once said

No other 'disease' (condition) in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

This highlights the critical importance of accurate diagnosis and robust data for children and adults living with EDS HSD and other hypermobility-related conditions and for improving awareness and support for neurodivergent individuals.

Diagnosis for hypermobility and neurodivergence

Accurate diagnosis of hypermobility conditions is essential for both children and adults. Diagnosis matters. For children understanding the issues of hypermobility in neurodivergence is key for attendance, education, therapies relational safety and understanding from families, schools, teachers and policy makers. An accurate diagnosis can also prevent later trauma.

For adults it can prevent years of being dismissed misunderstood or treated for the wrong or misattributed conditions. Without diagnosis people are left navigating pain chronic fatigue allergies gastrointestinal issues, trauma and other disabling symptoms alone.

Data matters. Robust data on the prevalence outcomes and lived experience of EDS HSD and neurodivergent conditions is essential. Without it these conditions remain invisible to healthcare services researchers and policy makers. Lack of data affects funding clinical trials and wellbeing leaving both children and adults without the resources they need.

Charity Voice

SEDSConnective was formed to highlight the intersection of hypermobility and neurodivergence as a user led voluntary charity responding to unmet needs and stigma. For years diagnoses such as autism and ADHD in girls and women were misunderstood or overlooked or stigmatised. The same is true for hEDS and HSD. By gathering data sharing experiences and advocating for better recognition we made a difference and the statistics are telling.

SEDSConnective has helped change perceptions and improve outcomes for thousands of people with our impact on the PostCovid-19 neurodivergence and hypermobility conference in 2025.

On Rare Disease Day we call for greater awareness of hypermobility EDS HSD and neurodivergence. Recognition and validation are essential after years of male biased research and funding. Without proper diagnosis individuals may once again be considered rare and risk receiving inadequate assessments that fail to reflect their lived experience.

We advocate for awareness, equality, health literacy, accurate data collection for equity in neurodivergence and hypermobility. Proper diagnosis and data collection ensure that both children and adults can access the care understanding and support they need to live full empowered lives and thrive.