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Webinar Series: Gene Replacement for Rett Syndrome 101
RSRT to Develop Communication Assessment Tool – 270 English Speaking Families Needed
Meet Our New Translational Medicine Advisory Board
Webinar Series: Updates on the World of Rett Research
Community Update on TSHA-102
RSRT Executive Director Featured in New York Times Article

Our Goal: A Cure for Rett

All of us at the Rett Syndrome Research Trust (RSRT) want a cure for Rett syndrome as urgently as you do. During the past 12 years, with the support of dedicated Rett families, we’ve advanced the most promising curative approaches. Every single company pursuing a cure for Rett is able to do so because they leveraged discoveries and resources that were incubated with RSRT funding.

Now is the time to leverage the momentum and excitement that surrounds Rett research by doubling down and expanding our efforts.

We will not rest until we have a cure.

Recently diagnosed?
We’re here to help

Getting a Rett syndrome diagnosis is one of the hardest things you’ll ever face. We know this first-hand. We’re parents too. Emotions can run the gamut and it can all seem overwhelming. You’re worried about your child and your family. You are reading everything you can get your hands on but you are not sure how to interpret it or if it's relevant.

CURE 360

Attacking Rett Syndrome
From Every Angle

From 2017 to 2020 we carried out Roadmap to a Cure, a research plan that identified and advanced six therapeutic strategies targeting the root cause of Rett Syndrome.

CURE 360 is the blueprint for how we now drive those advances into a coordinated, full-on attack on Rett.


Take Action

Every donation made to RSRT has occurred because a Rett family took action. If your child, grandchild, niece, godchild, or child of your close friend has Rett syndrome, we need your help. Please join our effort.

Rett Syndrome Global Registry

Imagine Revolutionizing Your Child’s Clinical Care

In 2022 RSRT will launch the Rett Syndrome Global Registry, a parent/caregiver-driven registry that taps into your valuable day-to-day experience with Rett, provides new tools to manage your child’s symptoms and needs, while advancing research. The Registry Pioneer program will give you early access and let you enter data right away, thereby allowing the registry to launch with a foundational dataset and be of immediate use.


MECP2 Duplication Syndrome

MECP2 Duplication syndrome (MDS) is caused by a genetic error that duplicates a section of the X chromosome that includes the MECP2 gene. The MECP2 Duplication Syndrome Fund at RSRT, created in 2010, puts the intellectual and scientific resources of RSRT immediately to work for the MDS community. The Fund exclusively supports research aimed at reversing MDS. 100% of every dollar contributed is invested in research — not a single penny goes to overhead.