Events

Nov
16
Sat
IRSF RettEd Day @ CHOP
Nov 16 @ 9:00 am – 5:00 pm
Date: Saturday, November 16, 2024 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:00a) Location: Children's Hospital of Philadelphia Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. LEARN MORE & REGISTER
Nov
20
Wed
My Rett “Ally Hour” @ Google Meet
Nov 20 @ 8:00 pm – 9:00 pm
Join Us for "Ally hour" – Your Guide to Getting the Most Out of My Rett Ally! Date: November 20 Time: 8 PM EST Discover how My Rett Ally is helping families just like yours manage care and save time! Join us for "Ally Hour," a free, interactive webinar designed to give you an inside look at everything My Rett Ally has to offer. In this exclusive event, the developers behind the app will walk you through key features, explore the unique ways families are using My Rett Ally daily, and provide tips and tricks to help you make the most of it. Plus, get an exciting sneak peek at some of the new features on the way! What to Expect:
  • In-Depth Feature Overview: A complete guide to My Rett Ally's tools for managing care, connecting with support, and keeping track of health.
  • User Stories & Benefits: Hear how other families are using the app in their caregiving routines and how it’s changing their day-to-day lives.
  • Tips & Tricks: Pro tips for navigating the app like a pro and discovering all its features.
  • Your Voice Matters: Have feedback or ideas? We’re all ears!
Whether you're a long-time user or just getting started, "Ally Hour" is your chance to learn, ask questions, and connect with a community that understands the unique challenges of caring for a loved one with Rett syndrome. REGISTRATION COMING SOON
Dec
4
Wed
FDA CBER Patient Listening Meeting @ Virtual Meeting
Dec 4 @ 11:00 am – 4:30 pm
On Wednesday, December 4 from 11:00 a.m. – 4:30 p.m. ET., the Rett community is invited to join the FDA Center for Biologics Evaluation and Research (CBER) for a public patient listening meeting to better understand patient and care partner perspectives on enrollment into gene therapy clinical trials. The objective of this meeting is to understand what caregivers of patients in the pre-symptomatic or early stages of disease take into consideration when deciding whether to enroll in a gene therapy clinical trial and potentially receive an investigational gene therapy product. This meeting is free and open to the public; however, registration is required. LEARN MORE & REGISTER
May
17
Sat
Enchanted Dreams Fantasy Gala for Rett @ The Grove
May 17 @ 4:00 pm
Date: Saturday, May 17, 2025 Time: 4 p.m. ET Location: The Grove in Newport, ME More information coming soon!