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.

DONATE TODAY

Fundraise

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

LEARN MORE

Advocate

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

LEARN HOW

News & Updates

Raising a Hand: A Journey of Healing, Hope, and Friendship

November 21, 2024
Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003. It was that spring afternoon in... Read More

DAYBUE in the Real World

October 29, 2024
Answers to your most frequently asked questions and resources to find out more about the first-ever FDA-approved treatment of Rett syndrome. According to the National Organization for Rare Disorders (NORD),... Read More

Transforming the Landscape of Rett Research

August 21, 2024
The International Rett Syndrome Foundation (IRSF) hosted its annual scientific meeting in Westminster, Colorado on June 18-19, 2024, as part of its ASCEND 2024 Rett Syndrome National Summit. By Mackenzie... Read More

IRSF Welcomes Two to Board of Directors

August 21, 2024
The International Rett Syndrome Foundation (IRSF), a leading patient advocacy foundation dedicated to funding research and supporting families affected by Rett syndrome, is pleased to announce the appointment of Parthy... Read More