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We’re in the process of reaching out to members to see how to best keep everyone updated and get their thoughts on information and support.

  • Looking directly at membership benefits over time by working with partners, securing charitable funding and developing the charity to meet the challenges of 2024 and beyond.
  • Facilitating and organising a range of community events, large and small, physical and online to allow us to reach everyone across the UK – discussing a wide range of topics on living with Stickler Syndrome.
  • Become part of the team by offering your services or support and help us to meet objectives as we grow and build our Stickler Syndrome community. Just drop us a message at with a little bit of background info so we can get a good idea of where you might best help.

Watch this space for information on membership as we move forward… we’re working on it!