Join us in Nashville!

Rett Syndrome National Conference: April 27-30, 2022. Designed to unite us as a community, this event will brings us together to find a cure for Rett.

Help Unlock Treatments
& Cures for Rett

The Rett Syndrome Registry(TM) is designed to increase the chances of clinical trial success and help bring curative treatment options to families.

Learn more

ISRF Center of Excellence Network Announced

IRSF designates 15 partner clinics across the U.S. into Center of Excellence Network to advance best-in-class Rett syndrome care.

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The Rett Syndrome Communications Guidelines

Unlock Their Voice. The Rett Syndrome Communications Guidelines provides the most appropriate therapies, devices, and strategies for your child.

Order Your Copy Today

FINAL STRETCH

Federal Funding Support for Rett Syndrome Research Pending in U.S. Senate

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Creating a World Without Rett Syndrome

Rett doesn't stop. Neither do we.

The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.

As we relentlessly pursue the best research and breakthrough discoveries in Rett syndrome, IRSF helps families thrive through resources, advocacy, and empowerment.

Learn more

About Rett Syndrome

Rett syndrome is a rare genetic neurological disorder that occurs primarily in girls and more rarely in boys. Rett syndrome leads to severe impairments, affecting nearly every aspect of the child’s life. Finding trusted information is the first step towards simplifying this journey. The information found here is reliable, current and vetted by global experts in the field of Rett syndrome.

What is Rett Syndrome?

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

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Living with Rett

Life with Rett syndrome presents many challenges. It also presents so many opportunities for joy! We want to help you in your journey of living with Rett syndrome.

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Be Empowered

Get latest information on clinical trials, International Rett Syndrome Foundation educational programs, and local resources to help your family or loved one thrive.

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480

Research projects

$50M

In funded research

6

Active Clinical trials

15

Centers of Excellence

Our Approach

Transforming the lives of those with Rett syndrome today and tomorrow

Rett syndrome is an incredibly complex disorder that will require a multi-pronged approach to treat and cure. Our unwavering strategy focuses on treatment medications, gene therapy and neuro-habilitative therapies, and we are bringing the first and only treatment that addresses the underlying biology for Rett syndrome into the final phase of clinical testing.

Learn About Our Research Strategy

This Month’s Feature

Cerevance

Cerevance is a pharmaceutical company focused on a new target that may address the underlying pathology caused by a loss of MECP2.

Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

October 18, 2021

Hive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support the Rett community. Rett syndrome is a rare disease... Read More

IRSF Appointed to NHC Standard of Excellence Program

September 10, 2021

The National Health Council (NHC) Standard of Excellence program recently appointed IRSF to its prestigious membership. The NHC is a 100-year-old organization whose mission is to provide a united voice... Read More

COVID UPDATE: Best practices according to our medical expert

August 17, 2021

As COVID numbers surge once again, we have asked IRSF Medical Advisor Dr. Tim Benke, Rett Clinic Medical Director at Children’s Hospital Colorado, to provide information related to COVID-19 to... Read More

Help Unlock Treatments & Cures for Rett with IRSF’s Rett Syndrome Registry

June 17, 2021

Your family can be the key that researchers and industry need to create a world without Rett. And the International Rett Syndrome Foundation (IRSF) is making it easier than ever... Read More

Dec

8

Retted: Occupational Therapy Strategies: Maximizing Hand Function + Feeding

Wednesday, December 8, 2021

Apr

27

ASCEND 2022 Rett Syndrome National Summit

Wednesday, April 27, 2022

Sep

28

9th World Rett Syndrome Congress

Wednesday, September 28, 2022

View All Events

We are also grateful for all of the dedicated people at International Rett Syndrome Foundation. We are very involved and will continue to be because we are certain that in the near future our girls will benefit from the amazing research taking place to help end Rett syndrome.

Join us in Nashville!

Help Unlock Treatments
& Cures for Rett

ISRF Center of Excellence Network Announced

The Rett Syndrome Communications Guidelines

FINAL STRETCH

Creating a World Without Rett Syndrome

About Rett Syndrome

What is Rett Syndrome?

Living with Rett

Be Empowered

480

$50M

6

15

Our Approach

Transforming the lives of those with Rett syndrome today and tomorrow

This Month’s Feature

Cerevance

News and Updates

Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

IRSF Appointed to NHC Standard of Excellence Program

COVID UPDATE: Best practices according to our medical expert

Help Unlock Treatments & Cures for Rett with IRSF’s Rett Syndrome Registry

Upcoming Events

Dec

8

Retted: Occupational Therapy Strategies: Maximizing Hand Function + Feeding

Wednesday, December 8, 2021

Apr

27

ASCEND 2022 Rett Syndrome National Summit

Wednesday, April 27, 2022

Sep

28

9th World Rett Syndrome Congress

Wednesday, September 28, 2022

Kassie Morell, mom to Kenzie and Kaylie age 4

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