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.


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.


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.


More than 90 cents of every dollar supports our mission. Help fund critical research towards a cure.



Start an online fundraiser, participate in an annual IRSF event, or start one of your own.



More awareness means more support for families and more funding for critical research.


News & Updates

Taysha Gene Therapies Adolescent & Adult Study Expanded to U.S.

February 29, 2024
Today, Taysha Gene Therapies shared several exciting updates on their REVEAL Phase 1/2 clinical trial of investigational gene therapy TSHA-102: The study will now expand to include adolescent and adult... Read More

My Rett Ally: Revolutionizing Care Management for Rett Families

January 11, 2024
On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list for her daughter, Macy. Macy lives with... Read More

Neurogene Announces First Pediatric Patients Dosed in US Gene Therapy Clinical Trial

November 30, 2023
We’re excited to share that today Neurogene announced that two pediatric patients have been dosed in their Phase 1/2 trial of investigational gene therapy NGN-401. For Neurogene’s full press release,... Read More

Acadia Pharmaceuticals Acquires International Rights to Trofinetide

July 13, 2023
BIG NEWS for our international Rett syndrome community! Today, Acadia Pharmaceuticals announced they have acquired the rights to make trofinetide available for the treatment of Rett syndrome across the globe.... Read More