Support for every step of the Rett journey.
Reliable information, practical family resources, specialist contacts and a welcoming community for everyone whose life is touched by Rett syndrome.
Rett syndrome information and support in one place
Rett Syndrome Support is here for every step of the Rett journey. Whether your family is newly diagnosed, looking for practical day-to-day ideas or preparing for a medical appointment, the site brings important starting points together in a clear and welcoming space.
Families and carers can find printable hospital and communication resources, appointment checklists, information about research and clinical trials, and a worldwide directory of dedicated Rett clinics, experienced specialist services and national referral organisations. Health, education and care professionals can also use the dedicated professional information area.
The community forum offers a place to ask questions and share lived experience with people who understand. Information shared by members can be helpful, but it should never replace advice from a qualified healthcare professional who knows the individual.
Find the right starting point
Explore clear information, printable resources and verified contacts without having to search through forum conversations.
About Rett syndrome
Signs, diagnosis, communication, care and ongoing support.
→ 🌍Centres worldwide
Clinics, experienced services and national referral contacts.
→ 📄Family Resource Hub
Hospital, appointment, communication and research sheets.
→ 🩺Professional information
Guidance for health, therapy, education and care teams.
→Join the conversation
Ask questions, share experiences and connect with families and carers who understand.