Northwest Rett Syndrome Association

08/29/2026

Be sure to register for this FREE IEP training happening THIS Saturday! Open to the public!
https://portals.compass-360.org/Compass360WebUserServices08/org=ssp2p.org/request=questionnairePortal/questionnaireId=87D983EC-5720-49BB-BFBC-F45BEEA16B03

08/25/2026

Explore how the right educational setting can help a child with Rett syndrome learn and thrive, with classrooms and teaching styles adapted to their motor, communication, and sensory needs: https://bit.ly/4cJg8kz

Choosing a supportive, accommodating school is a key part of the journey.

08/25/2026

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

08/14/2026

08/14/2026

Scoliosis awareness matters: https://bit.ly/4rxKfjW

Scoliosis is one of the most common bone concerns in Rett syndrome, and early changes can be easy to miss. Leaning to one side, uneven shoulders or hips, or new difficulty sitting can be early clues. Regular monitoring and therapies like physiotherapy or bracing can help protect comfort and function over time. Tap through the article to learn what families can watch for and how care teams track progression.