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0800 907 8518

Effective: 30 July 2018

Ehlers-Danlos Support UK (EDS UK) aims to maintain high standards in all of its work but we recognise that we can sometimes get things wrong, despite our best intentions. We are committed to establishing and maintaining good relations with all volunteers, supporters, volunteers, donors, partners, and members of the public and we aim to always treat people with respect.

Your feedback is important to us. It helps us improve and do more of what we’re good at.

We actively encourage you to contact us with your feedback, whether good or bad. Complaints are especially important to us as they may help us to see where our procedures or activities might be improved. We keep a record of all complaints we receive to help us learn for the future and we regularly review these.

How to complain

You can call us, write to us or email us about your complaint.

To help us investigate and address all complaints, we ask you to provide us with as much information as possible.

  • The reason for your complaint
  • Where and when what you’re complaining about happened
  • The name(s) of anyone involved (if known)
  • What outcome you are hoping for
  • Your contact details (name, address, daytime telephone number and/or email)

You can call us on 0208 736 5604 or email

If you would prefer to write, please send your complaint to: Managing Director, EDS UK
Devonshire House, Manor Way, Borehamwood, Hertfordshire, WD6 1QQ

We aim to respond in full to complaints within ten working days. Where the matter requires more detailed investigation, we will respond in full within 28 days.

If, for any reason, you are not happy with the resolution of your complaint, then just reply to us, explaining why you were not satisfied with our response and what you would like us to do to put things right.

Taking your complaint outside EDS UK

If your complaint is about our fundraising work or activities and you are not satisfied with our response, you are entitled to take it to the Fundraising Regulator. The Fundraising Regulator ask that you do this within two months of receiving a response from EDS UK.

As a member of the Fundraising Regulator, EDS UK is committed to abiding by any decision they reach on complaints that are escalated to them.

Their contact details are:

Fundraising Regulator, 2nd Floor CAN Mezzanine Building, 49-51 East Road, London, N1 6AH

Tel: 0300 999 3407

Fax: 0333 321 8804