Help for Today, Hope for Tomorrow.
The International Rett Syndrome Foundation (IRSF) is the leading research, family support, and advocacy organization for Rett syndrome. We fund trailblazing research seeking treatments and a cure, empowering support that helps families cope and offers hope, and increasing awareness of this rare disorder that can affect nearly every aspect of any child’s life.
At IRSF, we are transforming lives every day in our fight to treat and cure Rett syndrome, presenting the best opportunity to better the lives of families living with this disorder.
Trailblazing Research
We have a track record of delivering real results: our highly comprehensive scientific program—bolstered by unprecedented industry partnerships—is the only one to include advancing genetic approaches, developing drug treatments, clinical research, and more.
Empowering Families
We connect with and support families every single day to provide easy steps and tools to help them thrive—including building a strong community of parents and experts that help generate key insights that, in turn, inform research.
Compelling Advocacy
We advocate for policies and funding that improve care, expand support, and advance research for the Rett community. Through our relentless efforts, we drive meaningful change to ensure better resources, services, and outcomes.
What is Rett Syndrome?
Rett syndrome is a rare and devastating neurodevelopmental disorder that impacts nearly every aspect of an individual’s life, including their ability to speak, walk, eat, and even breathe. Rett is a genetic disorder caused by a spontaneous pathogenic variant in the MECP2 gene. When the MECP2 gene does not function properly, it can cause issues throughout the entire body, leaving individuals understanding more than they can communicate.
Every individual with Rett is unique and so are their symptoms which begin as early as 6 months old when parents see their child miss development milestones and lose abilities they had already gained. Though Rett occurs most often in females (approximately 1 in 10,000 births), boys can have Rett too.
You are not alone.
Receiving a Rett syndrome diagnosis can feel overwhelming. At IRSF, we are unwavering in our commitment to helping your family meet the demands of life with Rett—today and tomorrow. We create in-depth resources, education, and community connections that elevate parents and caregivers into champions for themselves, their loved ones living with Rett syndrome, and the broader community.
IRSF Center of Excellence Clinic Network
Find expert care and treatment through our trusted network of best-in-class clinical and research centers.
Rett Research & Treatment Pipeline
Discover the latest on Rett syndrome research and the progress of the companies working to treat and cure the disorder.
Rett Education Programs
Check out our latest RettEd programs including educational opportunities, events, and more designed to help families connect and thrive.
Together, we can create a world without Rett syndrome.
Our understanding of how Rett syndrome works and how to successfully treat it is advancing more rapidly than ever before. Treatments and cures are not an if, but a when. Join us in giving hope to families all over the world living with Rett.
Ways to Give
Your support makes a difference. On average, more than 80 cents of every dollar donated supports our mission.
Fundraise for Rett
Start an online fundraiser, participate in an annual IRSF event, or start one of your own.
Raise Awareness
Help spread the word and raise awareness about Rett syndrome.
Advocate for Rett
Stand with us in advocating for policies and funding that benefit those with Rett syndrome.
Community Events & More
Join us at events and initiatives that support the Rett syndrome community.
Discover the information you need on Rett Syndrome.
IRSF offers resources to support the entire Rett community in advancing treatments, care, and understanding of Rett syndrome. Find out more about what we have to offer by choosing a category below.
Rett Syndrome News & Updates
Stay informed on the latest developments in Rett syndrome research, treatments, and community news.
Taysha Gene Therapies Updates Community on Positive Initial Findings and Expansion of TSHA-102 Clinical Trial
Today, Taysha Gene Therapies made several exciting announcements about the progress of their REVEAL Phase 1/2 trial in Canada and the future study of their gene therapy, TSHA-102. To read […]
Give them the opportunity for a brighter future.
Your support helps provide families with the resources they need while advancing the search for better care, treatments, and someday a cure. Join us in improving lives and fostering hope for individuals impacted by Rett syndrome.