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

Center of Excellence Clinic Network Expanded

July 11, 2024
Three additional clinics recognized for best-in-class Rett syndrome care. The International Rett Syndrome Foundation (IRSF) proudly announces the designation of three new clinics as Centers of Excellence (COE). Nicklaus Children’s... Read More

IRSF Announces Expansion of Scientific Leadership

July 2, 2024
The new leadership appointments include a key promotion and new hire to advance research and clinical development for Rett syndrome. The International Rett Syndrome Foundation (IRSF) is pleased to announce... Read More

Spotlight on Communication: An Interview with Dr. Theresa Bartolotta

April 10, 2024
For Theresa Bartolotta, Ph.D., CCC-SLP, good things have come through community. Bartolotta, a speech-language pathologist (SLP) with more than 40 years of clinical experience, discovered her passion for helping others... Read More

Advocating for YOU: Rare Disease Week on Capitol Hill

March 20, 2024
IRSF works tirelessly to advocate for you and your loved one with Rett syndrome. Our work takes many forms, our persistence is often unseen, and our successes are the result... Read More