Staying healthy with Rett Syndrome

Historically, Rett Syndrome has been viewed as a degenerative condition with a poor prognosis. But recent research has shown that people with Rett Syndrome can live into their 50’s with adequate medical care.

Below is some information which can help you keep your child, or adult, with Rett Syndrome safe and healthy until better treatments, and our cure, become available. This information includes links to the most up to date guidance and services which can help you manage specific symptoms, such as constipation and sleep difficulties.

Change is not only possible, it is within reach.

The most important thing to remember is that there is hope. We know the gene that causes Rett Syndrome and it’s a single one. Rett Syndrome has already been reversed in the lab. We’re not raising money for something abstract, we’re working to bring treatments and a cure for Rett Syndrome home.

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.

Hospital Passport: Making trips to the hospital a little less stressful

Hospital visits can be an ordeal for children and adults with Rett Syndrome and their families. From the basics like quickly informing treating clinicians how best to take blood, to more complex information like flagging up potential drug interactions, we hope the Reverse Rett hospital passport will help.

Rett syndrome research

Clinical Research

This is an exciting time in Rett Syndrome clinical research. Clinical trials are underway to treat key symptoms of Rett Syndrome and improve quality of life.

Latest news

  • Neurogene press release: NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

    Neurogene press release: NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

    On June 3rd, Neurogene announced that the FDA has chosen their Rett syndrome gene
  • Charities urged to check fundraisers’ credentials due to Pudsey scammer

    Charities urged to check fundraisers’ credentials due to Pudsey scammer

    Charities have been in the news this week, due to the unscrupulous acts of
  • Taysha receives go-ahead for early dose escalation in adolescent and adult Rett syndrome gene therapy trial 

    Taysha receives go-ahead for early dose escalation in adolescent and adult Rett syndrome gene therapy trial 

    Yesterday, 19th March 2024, Taysha Gene Therapies published a press release with an update