When rare disease leaders gather at #BIO2026, Rett syndrome will be part of the conversation.
IRSF CEO @laurabrod will serve as a panelist on patient-centered clinical development, helping ensure the voices of individuals with Rett syndrome and their families are represented.
11 yrs ago today my brother Jerry selflessly donated his kidney to me and saved my life! I am forever grateful to him and my entire family for all the support they gave to both of us. This is my yearly reminder to please consider organ donation if you can and #SaveALife
Today, @NeurogeneInc shared that 100% of participants are enrolled in the Embolden™ registrational trial of investigational gene therapy NGN-401 for Rett syndrome. More than half of these participants have been dosed to date. Read the full release here: https://t.co/cXSM2xxUt0
We are excited to announce the addition of four new members to the IRSF team, who will help us continue to better serve families, expand our reach, and support the momentum building across the Rett community!
Great day in DC for Rare Disease Week. @rettsyndromeorg is here to advocate and ensure the patient voice is heard loud and clear! So happy to see one of my favs at @everylifeorg and MN superstar @ahauser5 doing amazing things as a patient advocate. Advocacy matters. 🦓
Overflowing interest at the @RareAdvocates Rare Disease Week on Capitol Hill. @Rettsyndrome is glad to add our voice to raise awareness and advocate for the patient voice in rare disease policy in Congress and in regulatory decision making processes. #RAREDC2026
Rett syndrome is a rare and devastating neurodevelopmental disorder that impacts nearly every aspect of an individual’s life.
October is #RettSyndrome Awareness Month. 💜 Help us to raise awareness and critical funds in our fight against Rett. More: https://t.co/klq3RDWrSN.
The Purple Out for Rett is back! On Oct 17–19, let's turn the world purple for someone you 💜 with Rett syndrome! Save the date and make your plan to go purple, then find more tools to raise awareness at https://t.co/klq3RDWrSN.
#PurpleOutForRett#RettAwareness#RettSyndrome
Watch Anytime: Missed our live webinar "IEP Success: Championing Your Child’s Potential?" You can catch the full recording now! Learn strategies to help your child thrive and get practical tips to make the most of their IEP. 📺 Watch now: https://t.co/KmFb20pWl4
“Data rooted in the lived experience of families changes the game.” — IRSF CEO Laura Hameed (@laurabrod) on why Rett research is accelerating and how we’re meeting the moment. Watch here: https://t.co/jEohC1R2lZ
Join us for our next live RettEd panel focused on navigating the Individualized Education Program (IEP) process with confidence and clarity. Learn more and register at: https://t.co/FG9V4we55X