1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)
Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom
More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians
More than 50% of patients with Autism Spectrum also are hypermobile
Up to 46% of children with EDS and HSD are also diagnosed with ADHD
EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women
57% of patients with chronic pain in Australia rely on pain medications/analgesics
1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)
Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom
More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians
More than 50% of patients with Autism Spectrum also are hypermobile
Up to 46% of children with EDS and HSD are also diagnosed with ADHD
EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women
57% of patients with chronic pain in Australia rely on pain medications/analgesics
1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)
Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom
More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians
More than 50% of patients with Autism Spectrum also are hypermobile
Up to 46% of children with EDS and HSD are also diagnosed with ADHD
EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women
57% of patients with chronic pain in Australia rely on pain medications/analgesics
1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)
Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom
More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians
More than 50% of patients with Autism Spectrum also are hypermobile
Up to 46% of children with EDS and HSD are also diagnosed with ADHD
EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women
57% of patients with chronic pain in Australia rely on pain medications/analgesics
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At Hypermobility Health Connect® we empower individuals with Hypermobility, HSD, EDS, and related conditions, including POTS, Dysautonomia, MCAS, and neurodivergence. We also equip healthcare professionals with best-practice knowledge to enhance care, bridging the gap between lived experience and professional expertise.
Together, we foster a more informed, connected, and supportive community.
Want to add your support group to the list? Contact us.
Below is a patient link to take our evidence-based hypermobilty, HSD and hEDS online screening test.
Hypermobility Health Connect® offers specialised education and professional development designed to equip allied health and medical professionals with the essential knowledge and practical skills to recognise, confidently & accurately diagnose, and effectively manage individuals with Hypermobility, Hypermobility Spectrum Disorder (HSD), and Hypermobile Ehlers-Danlos Syndrome (hEDS).
Led by Pauline Slater(B.App.Sc (Physio), M.Ed., MAPA (Pain & Paediatrics), MAPS, HMSA Member, EDS Society Affiliate, POTS Foundation Member), our programs include face-to-face workshops, presentations, live webinars, and mentoring to deliver evidence-based, hands-on learning. This integrated approach to education and training supports enhanced clinical outcomes.
Hypermobility is relatively common, especially among certain populations. Understanding its prevalence is challenging due to misdiagnosis, underdiagnosis, and inconsistent assessments.
For physiotherapists, those treating pain and rehabilitation health professionals, individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) may represent 30-40% of those seeking treatment for pain or musculoskeletal conditions, rising to 55% when considering only females.
Studies show that 5-43% of the general population have generalised joint hypermobility (G-JH), with higher rates in females and individuals of Asian, Middle Eastern, Inuit, or African ethnicity.
Approximately 10% of those with generalised joint hypermobility experience physical and/or psychological symptoms, making them eligible for assessment for a Heritable Connective Tissue Disorder like hEDS or HSD. HSD and hEDS are now believed to be up to 10 times more common than previously thought.
In a London Rheumatology clinic, 58% of non-Caucasian females and 29% of males exhibited generalised joint hypermobility syndrome. A 2021 study in Wales reported the prevalence of hEDS and HSD to be around 1 in every 500 people.
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HSD and hEDS are complex diseases that can cause diverse types of pain, including musculoskeletal, neurological, visceral, autonomic, and psychosocial pain. Identifying the exact cause of pain is crucial for effective treatment.
Differential diagnosis of pain causation is essential for several reasons:
Accurate diagnosis is essential for effective management, holistic and tailored treatment plans, preventing misdiagnosis and potential mistreatment, and improving patient outcomes.
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Hypermobility Spectrum Disorders (HSD), Hypermobility, and Hypermobile Ehlers-Danlos Syndrome (hEDS) can significantly impact an individual’s life due to overlapping conditions:
These conditions highlight the complexity of managing hEDS and HSD, emphasizing the need for a multidisciplinary approach to care.
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If you want to add your support group to the list, or know of another group that you think we should add, please Contact us.
Connective Tissue Disorders Network Australia (CTDNA) is a collaborative initiative of individuals living with or caring for those with Heritable Connective Tissue Disorders (HCTD). Many members are both patients and carers. CTDNA aims to establish a national network of advocates, healthcare professionals, and researchers interested in HCTD to improve care and management for Australians affected by these conditions.
Read MoreA support group for individuals living with or caring for those with Hypermobility Syndromes or Ehlers-Danlos Syndromes.
An online support group for individuals with Ehlers-Danlos Syndrome and their families in South Australia.
An online support group for individuals in Australia and New Zealand with Ehlers-Danlos Syndrome and related comorbidities.
A support group for individuals in Australia who have Ehlers-Danlos Syndrome or care for someone with the condition.
Rare Voices Australia (RVA) is the national peak body for Australians living with rare diseases. RVA advocates for improved health, disability, and policy outcomes. The organisation collaborates with people living with rare diseases, governments, peak bodies, researchers, clinicians, and industry stakeholders.
Read MoreA Melbourne-based community support group for individuals with Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders, and related conditions. The group provides information and support to people of all ages.
Read MoreAn Australian support group for individuals diagnosed with POTS and their families and friends seeking a better understanding of the condition.
Read MoreA support group providing information for individuals in Australia with POTS (Postural Orthostatic Tachycardia Syndrome), Long Covid, MCAD (Mast Cell Activation Disorder), ME/CFS, Ehlers-Danlos Syndrome, CSF leaks, Retroflexed Odontoid, Empty Sella Syndrome, Intracranial Hypotension, ASD (Autism Spectrum Disorders), GERD, IBS, FODMAPS, Chiari Malformation, and related conditions.
Read MoreMarfan Network Australia is a nationwide support group for individuals affected by Marfan Syndrome. It provides access to information on Marfan Syndrome signs, symptoms, and related connective tissue disorders, maintains a directory of national events and meetings, and offers regular updates on the latest medical research.
Read MoreA volunteer-run support group providing information and shared experiences for individuals and families affected by Marfan Syndrome. The group offers guidance on diagnosis, management, and treatment. Open to individuals with Marfan Syndrome, their families, carers, healthcare professionals, and other interested parties. Supporting enquiries across Australia.
Read MoreA multidisciplinary clinic at The Alfred in Melbourne that provides specialised care for individuals with Marfan Syndrome and related aortopathies. The clinic aims to improve health outcomes through expert management.
Read More“International virtual support groups hosted by Ehlers-Danlos Society staff. Monthly and quarterly meetings provide opportunities for individuals to share experiences and connect with others worldwide. These groups serve as discussion forums for support and networking. Medical advice is not provided.
Available chat groups:
– EDS and HSD
– Parents
– Teens (Ages 13-18)
– vEDS
– Partners and Spouses
– Men
– LGBTQIA+
– Community of Colour”
A UK-based organisation with over 50 online and in-person support groups. These groups provide safe environments for individuals to connect, share experiences, and learn from each other. Regional Facebook groups are available for members.
Read MoreA support group for individuals in Australia affected by Dysautonomia.
A support organisation focused on raising awareness of Fibromyalgia, a chronic condition that causes widespread pain, fatigue, and other symptoms that impact daily life.
Read MoreAn Australian support group for individuals with Chiari Malformation, Syringomyelia, and related conditions.
A support organisation promoting self-management of chronic pain through evidence-based treatment. Open to individuals living with chronic pain and their carers.
Read MoreA UK-registered charity supporting individuals and families affected by Vascular Ehlers-Danlos Syndrome.
A resource group providing information on Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.
West Australian based support group for families supporting and caring for those with Ehlers-Danlos Syndrome. The group supports each other, swaps ideas, recommends medical professionals and arrange meet ups. This group is for individuals NOT for health professionals who treat those with Ehlers-Danlos Syndrome.
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