Rett Syndrome Health Checklist

Rett Syndrome Health Checklist (UK, 2019)

The Rett syndrome 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.

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The UK Rett Syndrome Health Checklist was developed in 2019 through collaborative work between Reverse Rett, Rett UK, FOXG1 UK and the UK Rett Disorders Working Group. This group brought together clinicians, therapists, consultants, and experts by experience, including families, caregivers, and patient organisations.

That alliance concluded in 2024. Reverse Rett now operates independently, maintaining its own evidence base and strategic positions on disease burden and advocacy.

The clinical and practical guidance contained within the Health Checklist remains valid and continues to be a useful resource for families caring for a person with Rett syndrome.

 

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.

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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 [email protected]

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