Rett Syndrome Health Checklist

The Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1) are delighted to bring you The Rett Syndrome Health Checklist.

The Health Checklist provides information to help with symptom identification and management including suggestions for drugs which may help and those which may cause difficulties for people with Rett syndrome. There are also links to relevant research papers, case studies and best practice guidance.

Many thanks to everyone who has contributed to this important document and to The Bolland Charitable Fund for their support.

The checklist is a result of two years collaborative work between the charities and the Rett Disorders Working Group; clinicians, therapists and consultants who are very experienced in Rett syndrome.

This is the first version and we anticipate there will be regular updates.


There will be further papers linked to the checklist which will cover some key areas in more depth.

We hope you will find this a key ‘go to’ document to advocate for the best care and treatment for your daughter or son.

Please share it with key people involved in their care.


Request yours now

If you would like a copy of the Rett Syndrome Health Checklist, please fill out the form below and we will send one in due 7-10 working days. Any enquiries, please email

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