Nov
20
Wed
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!
Dec
4
Wed
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 Dec
16
Mon
Dec 16 @ 5:00 pm – 8:00 pm
Feb
27
Thu
Feb 27 @ 6:00 pm – 9:00 pm
Join us for an evening of mystery and masks in honor of Macie! Last year's murder mystery dinner was so fun - we wanted to do it again! Please join us for a fun night out as we raise money to support Rett syndrome research. In addition to dinner and a murder mystery show, you will enjoy appetizers, a DJ, raffle baskets, 50/50, mystery mirror game of luck, pay to play games and more. We encourage attendees to wear masquerade-themed attire, but it is not required. RESERVE YOUR SEAT! SPONSOR THIS EVENT Apr
5
Sat
Date: Saturday, April 5, 2025 Time: All Day Location: Nationwide Children's Hospital (Columbus, Ohio) 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. MORE INFORMATION COMING SOON! May
3
Sat
Date: Saturday, May 3, 2025 Time: All Day Location: Children's Hospital Los Angeles (Los Angeles, CA) 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. MORE INFORMATION COMING SOON! Jun
9
Mon
Date: June 9-11, 2025 Time: All Day Location: Boston, Massachusetts MORE INFORMATION COMING SOON! The scientific community is invited to join us in Boston for the 2025 IRSF Rett Syndrome Scientific Meeting! The IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2.5-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome. Jul
9
Wed
Date: July 9-12, 2025 Location: San Diego Area, California (Carlsbad & Oceanside) IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It's an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome. MORE INFORMATION COMING SOON! Sep
13
Sat
Date: Saturday, September 13, 2025 Time: All Day Location: Boston Children's Hospital (Boston, MA) 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. MORE INFORMATION COMING SOON! Subscribe