Rett UK

Imagine being told that your happy, healthy toddler has a rare neurological disorder that will leave them needing lifelong care and support. Rett syndrome changes lives in an instant. With your support, Rett UK is there from the very beginning.

Whatever your challenge – whether it's running, walking, cycling, swimming, taking on an obstacle course, or something completely different – you can make a life-changing difference for people affected by Rett syndrome.

Rett syndrome is a rare neurological disorder that primarily affects girls, although boys can also be affected. It is usually diagnosed in early childhood after a period of seemingly typical development, when children begin to lose previously acquired skills. People with Rett syndrome often have profound physical disabilities and complex communication needs, requiring specialist care and support throughout their lives.

Since 1985, Rett UK has been there for families every step of the way. For more than 40 years, we've provided specialist family support, trusted information, advocacy and opportunities to connect with others who understand. We also work to improve awareness of Rett syndrome among health, education and social care professionals, while supporting research that brings hope for the future.