Our free telephone and email helpline is available to everyone, including people with EDS, their families, friends, carers and healthcare professionals.

The helpline (0800 907 8518) is open 09:00 – 17:00 Monday to Friday.  Please leave a message outside these hours and our Helpline Manager will call you back. The helpline is staffed by one person so at busy times it may take up to five working days to return your call.

Additional languages currently spoken on the helpline are Urdu, Punjabi and Hindi (Tuesdays and Fridays only).

Please call our helpline for information on the following:

  • Getting a diagnosis
  • Advice on managing symptoms
  • Understanding what EDS is
  • Referral procedures for EDS specialists
  • Access to ‘friendly specialists’

Our main office number (0208 736 5604) should be used for all other enquiries.

The helpline is completely dependent on donations. Please consider donating to keep this vital service running.