Our helpline provides trusted information and directs you to reliable resources about Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). If you need urgent medical or emotional support, please contact your local healthcare provider or crisis helpline.
We can:
- Share general information on diagnosis, management, and care.
- Direct you to professional and peer support resources.
- Provide educational materials from The Society.
We cannot:
- Offer medical advice, diagnosis, or genetic testing advice.
- Review, interpret or comment on test results or medical records.
- Provide mental health, crisis or counseling support.
- Provide direct financial or benefits assistance.
- Act as a liaison between community members and healthcare professionals or service providers.
Before contacting us, you may find what you’re looking for in the resources below:
Conditions & Diagnosis
- What is EDS? – Overview of the Ehlers-Danlos syndromes, including the different types and key features.
- What is HSD? – Information about hypermobility spectrum disorders and how they differ from EDS.
- Diagnosis – Learn how EDS and HSD are clinically diagnosed and what assessments or criteria may be involved.
- Genetics and Inheritance – Information on how certain types of EDS can be inherited and when genetic testing may be appropriate.
Living & Wellbeing
- Management – Practical advice on living with EDS or HSD.
- Mental Health Resources – Find guidance and links for emotional wellbeing and mental-health support.
Finding Support & Community
- Support Group & Charity Directory – Connect with regional or topic-specific groups and organizations.
- Inspire Online Community – Join discussions with others living with EDS or HSD.
- Find a Helpline – If you need immediate emotional support, contact a helpline in your country.
Clinical Care
- Healthcare Professionals Directory – Search for clinicians familiar with EDS and HSD by location or specialty.
Education & Learning
- YouTube and Past Events Recordings – Watch webinars, conference sessions, and educational videos.
The Ehlers-Danlos Society cannot mediate complaints or review individual care experiences. When concerns about listed clinicians or organizations are brought to our attention, they are noted for awareness in line with our Third-Party Healthcare Professionals and Partners Policy. We encourage contacting the provider or organization directly for follow-up.
