International Rett Syndrome Foundation

International Rett Syndrome Foundation IRSF's vision is to create a world without Rett syndrome. We fight for families living with Rett syndrome and a world without it. Learn more at rettsyndrome.org.

Guided by families & experts worldwide, we fund trailblazing research seeking treatments and a cure, empowering support that helps families cope and offers hope, and increasing awareness of Rett. As the leading Rett syndrome research and advocacy organization, the International Rett Syndrome Foundation builds upon our 40-year commitment to breakthrough discoveries and life-changing advancements in

research toward treatments and a cure while supporting families affected by Rett syndrome. Through our legacy foundation pioneers, we have invested over $60M in research leading to identifying Rett syndrome’s cause, demonstrating Rett syndrome is reversible in mice, and supporting the clinical trials that led to the first-ever FDA-approved treatment.

A meaningful step forward for the Rett syndrome community in Europe, and for progress in treating Rett around the world....
08/24/2026

A meaningful step forward for the Rett syndrome community in Europe, and for progress in treating Rett around the world. 💜

The European Commission has granted marketing authorization for DAYBU® (trofinetide) for the treatment of neurobehavioral symptoms of Rett syndrome in adults and pediatric patients ages 5 years and older, making DAYBU the first and only treatment approved for Rett syndrome in the European Union.

The authorization applies across all 27 EU member states, as well as Iceland, Liechtenstein, and Norway. Pricing and reimbursement negotiations will now take place at the country level, so timing of access will vary.

We are encouraged to see an approved treatment option reach more of the global Rett community and will continue to share updates as they become available.

Read the full announcement from Acadia Pharmaceuticals: https://acadia.com/en-us/media/news-releases/european-commission-approves-daybu-trofinetide-as-the-first-and-only-treatment-for-neurobehavioral-symptoms-of-rett-syndrome-in-the-european-union

Registration is now open for the next Rett in Focus webinar! Join IRSF on Wednesday, September 9th, at 12 p.m. ET for Re...
08/24/2026

Registration is now open for the next Rett in Focus webinar!

Join IRSF on Wednesday, September 9th, at 12 p.m. ET for Rett in Focus: Neurogene Community Update, featuring information from Neurogene Inc. about NGN-401, its investigational gene therapy for Rett syndrome.

Building on updates shared at the ASCEND 2026 National Summit, Neurogene will discuss recent developments in the NGN-401 clinical program and what they anticipate will come next. Families can also hear about new educational resources and community initiatives, including Neurogene Cares and its Caregiver Advisory Council.

The webinar will include a moderated Q&A based on questions submitted in advance during registration.

Register: https://us02web.zoom.us/webinar/register/WN_-Qxmq0ksSZugZHt_iMK5BQ

The Rett community was out in full force today at the 4th Annual Westbury Open for Rett Research in Gretna, Nebraska! 💜⛳...
08/22/2026

The Rett community was out in full force today at the 4th Annual Westbury Open for Rett Research in Gretna, Nebraska! 💜⛳️

IRSF’s Staci Almager joined Rett families, friends, and supporters for the sold-out tournament, including IRSF Board Vice Chair Parthy Evans and Kevin Black and David Warren Clements of Raising A Hand for Rett.

What makes events like the Westbury Open so special is the families behind them. Molly’s parents, Kelsey and Richard, help lead the event alongside an incredible team of volunteers and supporters, turning their love for Molly into action for the broader Rett community. Their commitment has helped the Westbury Open sell out four years in a row and raise more than $43,000 for Rett syndrome research in its first three years.

We are so grateful for Rett families who bring their communities together, raise awareness and help fuel progress in research. Thank you to Kelsey, Richard, the entire Westbury Open team, and everyone who showed up today in support of Molly, Addison, Azalea, and families everywhere impacted by Rett. 💜

08/21/2026

💜 There’s nothing quite like seeing the Rett community come together!

We’re looking back at last year’s Dallas Strollathon and all the smiles, connection, and support that made the day so special. From families walking side by side to celebrating our incredible people with Rett, this is what community is all about.💜

Want to learn more about Strollathons and how you can get involved? Tune in to today’s episode of Rett’s Talk About It! LIVE from the Purple Couch at 2pm CST!💜 Vanessa Peace Dawson's Rett Journey Megan Ladwig

IRSF FeelGoodFrida

08/20/2026

Boys with Rett are here, and their experiences are an important part of the Rett story.

During a parent panel on the lived experience with Rett at IRSF’s Annual Scientific Meeting, Mason’s mom, Lisa Behrens, shared some of the challenges her family has faced. She spoke about people questioning Mason’s diagnosis or even his existence, as well as navigating research and clinical trials where males may not always fit traditional expectations.

Her experience is an important reminder of why awareness and inclusion matter.

Our understanding of Rett syndrome in males continues to grow. Research shows that Rett in males has historically been under-recognized, and males can experience a broad spectrum of symptoms and clinical presentations.

At IRSF, we are committed to ensuring males with Rett and their families are recognized, supported, and represented as we advance research, improve care, and work toward treatments and cures for all people living with Rett syndrome.

Mason is here. Boys with Rett are here. And their experiences belong in the Rett story. 💜

📢 ¡La versión en español de GUÍA DE COMUNICACIÓN del síndrome de Rett está disponible para descargar gratuitamente!Este ...
08/19/2026

📢 ¡La versión en español de GUÍA DE COMUNICACIÓN del síndrome de Rett está disponible para descargar gratuitamente!

Este recurso integral, basado en evidencia, ofrece orientación sobre la evaluación, intervención y manejo a largo plazo de la comunicación en personas con síndrome de Rett. Su desarrollo contó con la participación de más de 600 profesionales y cuidadores de 43 países.

💜 Un agradecimiento especial a la Asociación Española de Síndrome de Rett y la Associació Catalana de la Síndrome de Rett por hacer esto posible.

🔗 Descarga tu copia gratuita hoy mismo y compártela con quienes apoyan a las personas con síndrome de Rett.

https://rett.es/wp-content/uploads/2021/03/20210315-Guia_Comunicacion_Rett.pdf

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📢 The Spanish version of the Rett Syndrome Communication Guidelines is available as a free download!

This comprehensive, evidence-based resource provides guidance on the assessment, intervention, and long-term management of communication in individuals with Rett syndrome. Its development included the participation of more than 600 professionals and caregivers across 43 countries

💜 Special thanks to Rett Spain and Associació Catalana de la Síndrome de Rett for making this possible.

🔗 Download your free copy today and share it with those who support individuals with Rett syndrome:https://rett.es/wp-content/uploads/2021/03/20210315-Guia_Comunicacion_Rett.pdf

☕️ Your daily coffee can help fuel Rett research.We’re excited to share a new fundraising collaboration with Rare and Ro...
08/18/2026

☕️ Your daily coffee can help fuel Rett research.

We’re excited to share a new fundraising collaboration with Rare and Roasted! For every 12 oz. bag of coffee or 12-count package of pods purchased, $1 goes directly to IRSF to support Rett research and family support. 💜

This mission is personal for the family behind Rare & Roasted, whose daughter, Kylie, lives with Rett syndrome. They’ve set an ambitious goal to raise $1 million for Rett by 2030, turning their love of exceptional coffee into meaningful impact for the Rett community.

Every purchase helps create a ripple for Rett research. Explore Rare & Roasted’s coffees and find your new favorite cup.

☕️ Shop now: https://rareandroasted.com/

Registration is now open for RettEd Day with Cincinnati Children's an IRSF-designated Center of Excellence! Join speaker...
08/17/2026

Registration is now open for RettEd Day with Cincinnati Children's an IRSF-designated Center of Excellence! Join speakers including Dr. Jamie K. Capal, Dr. Rochelle Witt, and IRSF's Paige Nues for a full day of programming, followed by a parent panel and social hour reception with members of the local Rett community.

📅 Reserve your spot today: rettsyndrome.org/retted-cchmc26

Thank you to our 2026 presenting sponsor Acadia Pharmaceuticals as well as supporting sponsors Neurogene Inc. Taysha Gene Therapies, and UCB Biopharma for helping IRSF provide educational resources and support to families affected by Rett syndrome.

08/14/2026

This , come spend a beach day with our Rett family! 🌊💜

A day at the beach may seem simple, but with Rett syndrome, it can take a little extra planning and a few extra hands. From getting everything down to the beach to pulling a wheelchair through the sand, sometimes you just have to get creative and make it work!

But at the end of the day, it’s all worth it for moments like these—sunshine, salty air, toes in the water, and time together as a family. ☀️🐚

For the Rett families who know exactly what goes into making days like this happen, we know you get it. 💜 And for those who may not, we hope this little glimpse into life with Rett brings more awareness to the everyday things families navigate to make these memories possible.

From coast to coast, the Rett syndrome community is coming together in meaningful ways to raise awareness, support famil...
08/12/2026

From coast to coast, the Rett syndrome community is coming together in meaningful ways to raise awareness, support families, and help advance research.

There are also several community-led events happening across the country next month:

📍 September 6| Annapolis, MD
Cure for Cata
Enjoy an end of summer pig roast fundraiser

📍September 19 | Olney, MD
Charlotte's Raise a Glass for Rett
Raise a pint and have a slice to raise funds for Rett syndrome research

📍September 24-26 | Port O'Connor, TX
Borracho Pescador Fishing Tournament
Get your bait and tackle ready for competitive fishing in support of Rett syndrome.

📍September 26 | Nolensville, TN
Rise Up For Rett
Enjoy a community event filled with family fun activities benefiting the International Rett Syndrome Foundation

From brand-new events to long-standing favorites, it’s inspiring to see so many communities showing up for Rett families.

Learn more about these events (and how to create one of your own!) by visiting our event calendar (link in bio).
https://www.rettsyndrome.org/get-involved/events-calendar/.

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