RETT SYNDROME PATIENT REGISTRY
Unveiling hope for Rett syndrome.
rettX is the European patient registry where families help advance care, research, and treatments for Rett syndrome — across every country, in one secure place.
Why rettX matters
Rett syndrome is a rare genetic neurological disorder that primarily affects girls and leads to severe cognitive and physical challenges. Every story counts — and every family who joins helps build a clearer picture of how Rett impacts lives across Europe.
Your participation fuels research, improves care, and strengthens the voice of the Rett community across the continent.
HOW IT WORKS
Joining is simple
01
Create an account
Sign up to the secure rettX area with your email. A short verification keeps your account safe.
02
Register your loved one
Add basic profile information and upload a medical document confirming the Rett syndrome diagnosis.
03
Get validated
The rettX team reviews the diagnosis document. Once validated, your loved one joins the official registry.
04
Manage & contribute
Update profile data anytime, take part in optional surveys, and help shape European Rett research.
AN INITIATIVE OF
Rett Syndrome Europe
rettX is an initiative of Rett Syndrome Europe — the European federation of national Rett syndrome associations. Together we represent thousands of families across the continent, advocating for better care, services, and research.
Ready to make a difference?
Every story counts. Join the European Rett syndrome registry today.