Menu
It can be very helpful for families of children and adults with Rett syndrome to connect with other affected families, although this may seem daunting at first.
But there is no better source of information, support and comfort than someone else who is walking a similar path. Other families can also help you better understand systems, how to access resources and how best to advocate for your child.
Reverse Rett provides:
A closed Facebook group ‘Reverse Rett Connect’
A What’s app group ‘Rett Talk’
Online Bitesize workshops to help share the latest info about health, research and clinical trials with families in the UK and beyond.
Annual LEAP Conference for families to connect with others and learn more about emerging treatments.
We also have a number of What’s App groups for various Reverse Rett events and team challenges throughout the year. If you’re interested in taking part in something, please get in touch mailto:[email protected]
There is also independently run Facebook group called ‘Rett syndrome Group for UK families,’ which can be helpful.
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.
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 click here and let us know your name, your child’s name and age.
