Helplines and Support Services

Helplines provide a crucial support resource for Ehlers-Danlos Syndrome (EDS) patients, offering direct access to information, guidance, and emotional support. Whether newly diagnosed or managing complex symptoms, patients can use helplines to seek advice on medical care, connect with support groups, and find resources tailored to their needs. These services offer a lifeline for those navigating the challenges of EDS, providing both practical assistance and reassurance through knowledgeable, compassionate support. Helplines help bridge the gap between patients, caregivers, and the wider EDS community.

 

Current EDS Support Resources

Here’s a list including EDS and chronic pain-related support helplines and free services (difficult to maintain accuracy of the list):

 

1. The Ehlers-Danlos Society Helpline
   • For general questions regarding the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)​:
   • Please call the Helpline at 248-716-8336. Leave a message, including the time zone that you’re calling from.  Their Helpline staff will call you back (usually within three business days). More info at https://www.ehlers-danlos.com/eds-helpline/calling-the-helpline/
   • Try the Inspire Ehlers-Danlos Society Community
   • Website: Inspire EDS Support Group
   • A free, online patient-led community hosted by Inspire, in collaboration with The Ehlers-Danlos Society, where users can share advice, ask questions, and offer support.
     
     
2. EDS UK Helpline
   • Phone: +44 (0)20 8736 5601
   • Email: [email protected]
   • Website: EDS UK
   • Offers information, emotional support, and guidance for people affected by EDS in the UK.
     
     
3. Hypermobility Syndromes Association (HMSA) Helpline
   • Phone: +44 (0)33 3011 6388
   • Email: [email protected]
   • Website: HMSA
   • Provides support and resources for individuals with hypermobility spectrum disorders, including EDS. Membership is required to see full content. 
     
     
4. US Pain Foundation
   • Phone: +1 (800) 910-2462
   • Email: [email protected]
   • Website: US Pain Foundation
   • Offers support and resources for individuals living with chronic pain, including support groups, education programs, and a pain ambassador program to connect patients.
     
     Pain Connection (A program of the US Pain Foundation)
   • Website: Pain Connection
   • Provides daily chronic pain virtual support groups, a peer-moderated pain support program by geography and demographics, plus ongoing toolkit style educational webinars for those living with chronic pain. It’s all free and open to anyone and all available virtually.

These organizations provide essential support for individuals managing EDS and chronic pain, helping them navigate their health challenges with information, emotional support, and community connections. If you are aware of other organizations, please let us know and the list is hopefully always growing.