Rarer types support group

A welcoming space for people living with a genetically defined rare type of EDS 

Have you been diagnosed with a genetically defined (rare) type of Ehlers-Danlos syndrome? 

EDS Support UK’s Genetically Defined EDS Support Group provides a friendly, supportive environment where you can connect with others who understand the unique challenges of living with a rare type of EDS. 

What to expect 

• Meet others with a genetically defined rare type of EDS. 

• Share experiences, challenges and practical tips in a safe, supportive setting. 

• Learn from the experiences of others living with similar conditions. 

• Build connections and reduce feelings of isolation. 

• Ask questions in an informal, welcoming environment. 

Supported by specialist professionals 

Our meetings are attended by genetic counsellors from the EDS Sheffield Diagnostic Service, who are available to provide information, answer general questions, and support discussions where appropriate. 

Who can attend? 

These sessions are intended for individuals who have been diagnosed with a genetically defined (rare) type of Ehlers-Danlos syndrome. 

Whether you are newly diagnosed or have been living with your condition for many years, you are very welcome to join us. 

When are the meetings? 

If a meeting is coming up, it will be posted below.

Meeting dates, times and joining information are published regularly in: 

• The EDS Support UK Newsletter 

• The EDS Support UK website 

Please check these for the latest details of upcoming sessions. 

Stay connected 

Visit the EDS Support UK website and keep an eye on our newsletter to find out when the next support group is taking place. 

You don’t have to navigate a rare diagnosis alone. Join us to connect, share and support one another.