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 and more rarely in boys.

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 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

IRSF Awards $4.4M in Rett Syndrome Research Grants

January 31, 2023
Our commitment to setting up the next wave of Rett breakthroughs continues with the largest annual investment in our Foundation’s history. By Dr. Dominique Pichard, IRSF Chief Science Officer We... Read More

Neurogene Announces First Rett Syndrome Gene Therapy Trial in U.S.

January 23, 2023
We’re excited to share that Neurogene announced today that the FDA approved their Investigational New Drug Application (IND) to launch a clinical trial for their gene therapy treatment NGN-401 in... Read More

IRSF Receives $500,000 Donation from Vezbi Super App

January 3, 2023
International Rett Syndrome Foundation (IRSF) is proud to announce that it is the recipient of a $500,000 donation from the Vezbi Super App as part of its Project Seva. Along... Read More

Flu, COVID, & RSV: A Message to our Rett Community

December 8, 2022
By Dr. Tim Benke, IRSF Medical Advisor As many of you know, the United States is currently facing the triple impact of flu, RSV, and COVID-19. These respiratory illnesses are... Read More