Helpline

Our free telephone and email helpline is available to everyone, including people with ED or HSD, 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 we will call you back. The helpline is staffed by one person so at busy times it may take up to three working days to return your call.

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’
  • Information on accessing benefits
  • Emotional support

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.