
What is Rett Syndrome?
Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of life. Rett particularly affects speech, purposeful hand use, and coordination, leaving individuals understanding more than they can communicate. Caused by a gene mutation, Rett is first recognized in infancy and occurs primarily in girls, with a growing number of males now being identified.


FOR FAMILIES
Wherever you are on your Rett journey, IRSF is here to help you thrive.
We are walking this journey with you. IRSF is comprised of parents and friends of those diagnosed with Rett syndrome. We are dedicated to empowering families with the latest medical information, offering meaningful support and resources, and advocating for all those living with Rett syndrome.

ACCELERATING RETT RESEARCH
We’ve been aggressively advancing disease-modifying and potentially curative research for decades.
Our strategy is simple but powerful: improve care today and create treatments including cures for tomorrow. IRSF is committed to a full-spectrum approach, providing solutions for everyone living with Rett syndrome. We do this by investing in innovative research, working to build a robust treatment pipeline, and removing barriers to ensure clinical trial success.
Get Involved
Join our mission to transform the lives of all those affected by Rett syndrome. Your support can help families thrive and accelerate research toward treatments and a cure.

Give
More than 90 cents of every dollar supports our mission. Help fund critical research towards a cure.
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Fundraise
Start an online fundraiser, participate in an annual IRSF event, or start one of your own.
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Advocate
More awareness means more support for families and more funding for critical research.
LEARN HOWNews & Updates


2nd Adult Patient Dosed in Taysha Gene Therapies Study of TSHA-102

Introducing My Rett Ally: A New Tool to Support Caregivers
