Membership policy

1.0 Membership schemes and benefits

The Ehlers-Danlos Support UK (EDS UK) has two membership schemes available to anybody aged 18 or over touched by EDS (free membership and plus Fragile Links). The benefits of each scheme are outlined on the membership section of the website. EDS UK reserves the right to amend or cancel any benefits of each scheme and will notify members in advance of doing so.

By becoming a member of EDS UK you are only entitled to the benefits outlined on the website. Whilst we recognise the importance of the voice of our members in the work we do and have mechanisms in place to seek members’ opinions on a variety of topics, a member has no right to vote on decisions around how the charity operates.

EDS UK reserves the right to cancel a membership at any time for reasons including but not limited to:

  • Bullying of other members
  • Bringing the charity into disrepute
  • Abusing members of staff or volunteers of EDS UK
  • Acts of fraud against the charity or other organisations connected to the charity

2.0 Cancellation of membership

You have the right to cancel your membership at any time.

To cancel free membership, you can do so in the membership account section of the website.

To cancel plus Fragile Links membership, please contact the office on or 0208 736 5604. On cancelling you are entitled to a refund depending on how many issues of Fragile Links you have received:

No issues: 100%

1 issue: 50%

2 issues: no refund

If you wish to cancel your membership because you are unhappy with the quality of the service provided or you think we falsely advertised the benefits, please contact the office on or 0208 736 5604.

3.0 Renewing your membership

You can renew free EDS UK and plus Fragile Links membership through the website  or by contacting the office on or 0208 736 5604. If you do not renew a plus Fragile Links membership it will automatically change to free EDS UK  membership once it expires.

v.1.1 January 2021: The Ehlers-Danlos Support UK, Devonshire House, Manor Way, Borehamwood, WD6 1QQ