Rett syndrome is such a rare disorder it can leave you feeling terribly isolated. You may be desperate to be near someone who understands what’s happening and is experiencing the same roller coaster of emotions you’re going through.

Our local support groups can help. They’ve been set up so parents like you can meet other parents who understand what you’re dealing with. The groups are an empathetic space where you can share tips, strategies and support as well as organise informal social events.

We currently have support groups in Bristol, Essex, Kent and North London. For more information contact support@rettuk.org 

If you’d like to set up your own local support group, we can help you get started and will liaise with the group organiser about how much or little involvement you’d like from us. It’s your group so we don’t like to interfere, although we will need you to sign our guidelines before you get up and running.

It’s not a requirement of the group to fundraise for Rett UK – but of course we’d love it if this was something you wanted to do. Just have a chat with us about what you need in terms of fundraising packs, logos and promotional banners/merchandise – all of which we can provide. You might want to raise money for one of your group’s activities and we’ll happily support you with this where we can.