Rett Syndrome Health Checklist

The Rett Syndrome Health Checklist, published by the Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1).

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.

The checklist was developed through two years of collaborative work between Reverse Rett, Rett UK, FOXG1 UK  and the UK Rett Disorders Working Group. This consists of clinicians, therapists, consultants and experts by experience such as families, caregivers and patient organisations representing them.

 

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 [email protected]

    Your Details

     

    Contact Details

    Latest news

    • Why Jesy Nelson’s Fight for SMA Matters to the Rett Community

      Why Jesy Nelson’s Fight for SMA Matters to the Rett Community

      You might’ve seen recent headlines about Jesy Nelson, former Little Mix star, bravely sharing
    • First Patient dosed in final phase of Taysha’s TSHA-102 trial

      First Patient dosed in final phase of Taysha’s TSHA-102 trial

      Taysha Gene Therapies announced this week that they have dosed the first patient of
    • From the Garden Shed to Giving Back: Andrew Gent’s Music for Reverse Rett

      From the Garden Shed to Giving Back: Andrew Gent’s Music for Reverse Rett

      Musician, Andrew Gent has a real passion for music and is a true talent