Katie's Clinic for Rett Syndrome

04/21/2026

Registration is open for the first session of Rett in Focus, a new IRSF webinar series designed to give the Rett syndrome community a closer look at specific treatments, clinical trials, and therapeutic developments.

Join us on Tuesday, April 28, at 6 p.m. ET for an overview of DAYBUE® STIX (trofinetide), moderated by Dr. Dominique Pichard, Chief Scientific & Medical Officer at IRSF.

This session will explore how DAYBUE was studied, what clinical trial results showed, possible side effects, and how DAYBUE STIX may offer added flexibility within the treatment experience. DAYBUE or DAYBUE STIX are prescription medicines used to treat Rett syndrome in adults and children 2 years of age and older.To learn more and register:

https://us02web.zoom.us/webinar/register/WN_fVvRD4ojTUmF5--BbJyVMA?fbclid=IwY2xjawRU525leHRuA2FlbQIxMABicmlkETFTOWpRRkdEajJoM09WZEdXc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHq0WU440RY38e0Jax2VCBeCzwsLmXOz1-Vn7XsjfK2PyA3HBnpIQvKXlmq-z_aem_cMyajscMQO92NSDBWz5o-A #/registration

Please read the full Prescribing Information:https://daybue.com/daybue-pi.pdf, including Patient Information:https://daybue.com/daybue-patient-info.pdf

04/15/2026

Get registered! See you there!!

04/13/2026

Please share with your child’s providers! Continuing education available around Rett care!

IRSF provides a one-stop location where providers can find a wealth of CME credit opportunities to learn about Rett syndrome. Find all your Rett CME resources here.

04/07/2026

Don’t miss this fun and informative event! 🏕️🔥🐴🏊‍♀️

04/02/2026

IRSF can't wait to see you in Minnesota at the ASCEND 2026 Rett Syndrome National Summit! The meeting agenda is now available - check it out here: https://cvent.me/DymdoN.

Make sure to check back often for updates and more speaker announcements!

Space is filling up fast! Will you be there? Early bird pricing for ASCEND 2024 ends in two weeks! Learn more and register today: https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/

03/24/2026

From IRSF:
Registration is now open for IRSF’s RettEd Day with Phoenix Children's in Phoenix, AZ.

This marks the first RettEd Day designed to reach families beyond our network of Centers of Excellence—bringing education, resources, and connection to areas without a nearby specialized Rett clinic. It’s an important step in expanding how we serve the Rett community.

Join us for a full day of programming from 9:30 a.m. to 3:30 p.m., followed by a parent panel and social hour reception. Registration is just $10 and includes all programming and lunch.

RettEd Days are designed for adult caregivers of individuals with Rett syndrome.

Learn more and register: https://www.rettsyndrome.org/retted-pc26

With thanks to our 2026 presenting sponsor Acadia Pharmaceuticals and supporting sponsors Neurogene Inc. and Taysha Gene Therapies.

03/12/2026

From IRSF:
Hope matters. Action matters more.

In Rett Research in Motion: IRSF’s 2026 State of Research, Dr. Dominique Pichard and the IRSF scientific team gave an update on clinical trials and explained why progress in Rett syndrome depends on pursuing both genetic and non-genetic treatment approaches — building a pipeline of therapies that can work together to improve outcomes.

Missed it live? Watch the full webinar recording:
🎥 https://youtu.be/HRqav2LwkxI

03/03/2026

From IRSF:
Rett research is advancing in meaningful and measurable ways — from expanding treatment pipelines to gene therapy programs entering pivotal stages. In one week, IRSF’s scientific leadership team will provide a comprehensive update on where that progress stands and what is driving it forward.

Join Chief Scientific & Medical Officer Dr. Dominique Pichard and the IRSF scientific team for Rett Research in Motion: IRSF’s 2026 State of Research. This one-hour briefing will outline the current research landscape, the treatment pipeline, and how our collective efforts — through participation, advocacy, and investment — continue to accelerate advancement.

If you have questions about the science, the pipeline, or what comes next, we encourage you to submit them when you register.

Next Tuesday, March 10
1 p.m. ET

Register and submit your questions: https://us02web.zoom.us/webinar/register/WN_7q3Ytxi4SHSFi667dmhS4A

02/27/2026

Today, Neurogene Inc. announced that the U.S. Food and Drug Administration (FDA) has granted Breakthrough Therapy designation to NGN-401, its investigational gene therapy for Rett syndrome.

Breakthrough Therapy designation is intended to help expedite the development and review process, potentially allowing promising therapies to move through the regulatory pathway more efficiently. For individuals and families living with Rett, regulatory milestones like this represent meaningful progress in the continued effort to develop potential new treatment options.

Read more directly from Neurogene here:
- Press Release: https://ir.neurogene.com/news-releases/news-release-details/neurogene-announces-fda-breakthrough-therapy-designation-ngn-401
- Community Letter: https://www.neurogene.com/letter-to-our-rett-syndrome-community-february-26-2026/

02/26/2026

From IRSF:
The deadline to apply for a Summit Scholarship is THIS SATURDAY! These scholarships are intended to help ease the financial burden of attending ASCEND by covering registration, hotel accommodations, and travel for parents and caregivers.

Decision notifications will be sent by the end of March. Learn more and apply now: