Support today, hope for tomorrow
Support helpline: 01582 798911 other ways to get in contact

Have you had a new diagnosis?

aimee lee toddler - appealingYou’ve just been told that your daughter or son has Rett syndrome. It’s a rare disorder so you may have received limited information about the syndrome and how it will affect their life and yours. You’re probably confused, anxious and worried about the future. Your head is reeling with questions and you’re desperate to talk to someone who knows about Rett syndrome.

You’re not alone.

Rett UK are here for you right from the start. We have all the information you need to help you understand the disorder and what it means for your daughter or son. We also provide a huge amount of support for all your family not just now, at the beginning, but throughout your Rett syndrome journey.

Our Family Support Team is just on the other end of the phone. When you feel ready, we can also put you in touch with other local families so you can have a chat or meet up.

Together, we are strong.

* To talk to one of our Family Support Team members, please get in touch by calling our helpline on 01582 798911 or email us at 



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