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

A First for Rett: FDA Approves Trofinetide for Treatment of Rett Syndrome!

March 10, 2023
This first-ever treatment is approved for individuals with Rett syndrome. (Updated March 19, 2023) Today, March 10, 2023, Acadia Pharmaceuticals announced that their investigational drug, Trofinetide, has been approved by... Read More

IRSF Establishes Research Fund for Males with Rett Syndrome

February 21, 2023
The fund is established thanks to an inaugural gift from the Otis Family in honor of their son, Barrett. The Rett syndrome research landscape has never been more exciting. New... Read More

Taysha Gene Therapies Provides Update on Expansion of TSHA-102 Study

February 1, 2023
READ TAYSHA’S LETTER TO THE RETT COMMUNITY DALLAS, Jan. 31, 2023 (GLOBE NEWSWIRE) — Taysha Gene Therapies, Inc. (Nasdaq: TSHA), a patient-centric, clinical -stage gene therapy company focused on developing and commercializing AAV-based gene... Read More

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
A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!
It’s Giving Tuesday - Go ALL IN for Rett!

A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!