The Ehlers-Danlos Support UK

Description of service

EDS UK freephone helpline provides advice, information, and support to people with EDS, family members, friends, and medical professionals all around the UK. The helpline is run by Mya who has a post graduate diploma in Genetic counselling and has co-ordinated various genetic research studies. Mya is happy to answer any questions about diagnosis, treatment, or any other aspect of EDS, as well as information about EDS and related conditions. Mya is also able to talk directly to healthcare professionals who want to learn more about EDS. The helpline cannot give direct medical advice about specific treatments or medications as this should be co-ordinated directly with a doctor.

Key Focus

Support for people living with Ehlers-Danlos Syndrome (EDS)

Age Range

All ages

Opening Times

Mon, 9.30am-3pm, Tue, Wed, Fri 9.30am-5.30pm
closed Thurs and weekends

Area Of Operation

Whole of UK



Referral Method

Self referral

Registered Charity Number


Registered Company Number