Rett Connect

 

Learn · Empower·
Advocate · Prepare

It’s essential for families of children and adults with Rett syndrome to have access to up-to-date health information and peer support from other affected families. Rett Connect provides a closed Facebook group, What’s app group and online Bitesize workshops to help share the latest info about health, research and clinical trials with families in the UK and beyond.

Rett Connect Facebook Group is a private Facebook group for UK families of people with Rett syndrome which is run by Reverse Rett. This group is for us to share information with the community directly and for families to be able to ask questions and share experiences and it’s where we first publish the latest information about clinical trials and the latest research happenings

Join directly here. 

Reverse Rett Bitesize sessions are online sessions focused on sharing important health information with families and caregivers of children, young people and adults with Rett syndrome.

These sessions typically last one hour and are recorded and shared later on the Reverse Rett YouTube channel to give as many families as possible access to the information discussed.

Speakers include doctors, industry partners and experts by experience and are hosted by Reverse Rett Leadership.

View full Bitesize sessions here.
View Bitesize shorts here.

Rett Talk is a private WhatsApp group for families of people with Rett syndrome of all ages to chat directly with each other and the Reverse Rett team about anything Rett related. This is a friendly, informal way to stay connected.

If you’d like to join please text us on 07596 139466 and let us know your name, your child’s name and age. 

 

Latest news

  • Neurogene Announces First Patient Dosed in High-Dose Cohort of NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

    Neurogene Announces First Patient Dosed in High-Dose Cohort of NGN-401 Gene Therapy Clinical Trial for Rett Syndrome

    On June 18th, Neurogene provided an update on the first “high dose” patient in
  • Taysha Announcement Key Takeaways

    Taysha Announcement Key Takeaways

    On June 18th, Taysha shared interim clinical data from the REVEAL Adolescent & Adult
  • 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