EDS UK set up a helpline in January 2014 to provide advice, information, and support to people with EDS, family members, friends, and medical professionals all around the UK. We have a Freephone helpline open Monday, Tuesday, Thursday and Friday (09:30 – 17:30), and an email address that you can contact (details below).
Our helpline is run by Mya; she has a post graduate diploma in Genetic counselling, and has co-ordinated various genetic. research studies
Mya is happy to answer any questions you have about diagnosis, treatment, or any other aspect of EDS, as well as information about EDS and related conditions. She is also able to talk directly to healthcare professionals who want to learn more about EDS. Please note that she cannot give direct medical advice about specific treatments or medications, as this should be co-ordinated directly with your doctor.
Freephone: 0800 907 8518