Many questions about Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) can be answered through our resources, programs, and community resources.
Before contacting us, you may find what you’re looking for in the resources below:
What is EDS? – Overview of the Ehlers-Danlos syndromes, including the different types and hey 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.
Healthcare Professionals Directory – Search for clinicians familiar with EDS and HSD by location or speciality.
Mental Health Resources – Find guidance and links for emotional wellbeing and mental-health support.
Management – Practical advice on living with EDS or HSD.
YouTube and Past Event Recordings – Watch webinars, conference sessions, and educational videos.
How to Find Research – Learn how to search for and access relevant research studies and publications.
How to Read Research – Understand how to interpret research papers and make sense of findings.
Support Groups & 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.
If your question isn’t covered in the resources above, our team may still be able to point you toward the right information. The guidance below outlines the types of inquiries we can and cannot assist with.
We may be able to help with:
- Providing guidance to relevant and general EDS and HSD resources
- Directing you to professional and peer support resources
- Providing educational materials from The Society
- Answering questions about The Society programs or events
- Answering questions about donations or partnerships
- Providing technical support with registrations or accounts
We cannot help with:
- Offer medical advice, diagnosis, or genetic testing interpretation.
- 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.
- Facilitating direct contact between individuals, researchers, or clinicians
Still can’t find what you’re looking for?
If your question isn’t answered in the resources above, you can send our team a message and we will do our best to help or direct you to relevant information.
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