2023 RettAway
Thursday, June 22, 2023
Date: June 22-25, 2023 Location: Morgan's Wonderland Accessible Theme Park (5223 David Edwards, San Antonio, TX 78233) For Event Information...
Learn MoreRett Education
At International Rett Syndrome Foundation we believe that every family and caregiver should be empowered with information and knowledge. We believe that you can learn this from expert panelists through live and online educational opportunities. Every month, there are opportunities for you to learn about different topics for people with Rett syndrome. These are unique opportunities geared toward families, caregivers, clinicians, and therapists.
Have an idea for an online or in-person Rett-related care, treatment, or research topic we should cover in the future? Contact Paige Nues, Family Empowerment Director, at [email protected].
RettEd Webcasts
A regular series of live webinars, RettEd webcasts feature expert speakers on various Rett-related research and care topics to help build your personal pathway to empowerment. At the end of each webcast, attendees have a chance to ask questions and hear questions from others. There is no cost to participate, but online pre-registration is required.
Past recordings are available for free on our YouTube channel with our most recent webinars available at the bottom of this page.
RettEd Days
RettEd Days are designed to provide information, enrichment and connection for families, caregivers, educators, clinicians, and therapists to empower our community. Topics and discussions will include: research updates, medical and therapeutic intervention strategies, state specific programs & services, communication strategies, and other unique workshops.
August 5, 2023 – UCSF Oakland Children’s COE (Camp Arroyo, Livermore, CA)
September 9, 2023 – UTSW Dallas CoE (Dallas, Texas)
September 30, 2023 – Montefiore CoE (Bronx, New York)
More information coming soon!
RettAways
San Antonio, TX | June 22-25, 2023
Join us at Morgan’s Wonderland Accessible Theme Park! We’ll be spending the day at Morgan’s Inspiration Island Splash Experience, a tropical-island paradise with colorful splashpads, a river boat adventure ride, and more!
ASCEND rett syndrome national summmit
During the last week of April 2022, IRSF welcomed more than 500 members of the Rett community to the ASCEND 2022 Rett Syndrome National Summit. View the agenda, read the event recap, and access the ASCEND Resource Library for session videos, presentations, and more. The library is available for FREE for attendees and just $75 for anyone who wasn’t able to join us in Nashville.
Thank you to our 2023 Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome.
RettEd Video Library
IRSF offers a library of videos featuring expert speakers to help you on your personal pathway to empowerment. These videos feature expert speakers on various Rett-related research and care topics, from communication to genetics, current therapeutics to the medical complexities of Rett, living your best Rett-life and so much more. Check out our most recent RettEd webinars below, and CLICK HERE for the full video library.
Transitioning into Adulthood, Part 3:Quality of Life
In the 3rd talk in our 3-part series on navigating adulthood in Rett syndrome, we have candid conversation with families who have navigated the process to provide the best quality of care and construct meaningful lives for their adult loved ones while caring for themselves too.Q&A with Dr. Kathie Bishop, CSO, Acadia Pharmaceuticals
In anticipation of the FDA’s priority review of Trofinetide – the first potential treatment for Rett syndrome, Dr. Kathie Bishop, SVP Rare Disease, External Innovation & Chief Scientific Officer for Acadia Pharmaceuticals, answers your most frequently asked questions.Transitioning into Adulthood, Part 2:Lifecare Planning
The second in our 3-part series on topics pertaining to adulthood in Rett, this online workshop focuses on preparing for life post-high school when school services and support conclude. Geared for parents, guardians, and family members of the older teen and adult with Rett syndrome.What Comes Next? The FDA Regulatory Process from NDA to FDA Decision and Beyond
Join our experts as they review the FDA regulatory process, share what happens between a successful Phase 3 clinical trial and an FDA decision about a drug or therapeutic, and explain what could come next for trofinetide and the Rett community.Find our full Video Library of RettEd Webcasts on YouTube.
IRSF RettEd Day with UCSF Oakland Children’s CoE
Saturday, August 5, 2023
Date: Saturday, August 5, 2023 Time (Tentative): 8:00 a.m. - 4 p.m. Pacific Time Location: Camp Arroyo (5535 Arroyo Rd,...
Learn MoreIRSF RettEd Day with UTSW Dallas CoE
Saturday, September 9, 2023
Date: Saturday, September 9, 2023 Time (Tentative): 8:00 a.m. - 4 p.m. Central Time Location: Rett Syndrome & Related Disorders...
Learn MoreIRSF RettEd Day with Montefiore CoE
Saturday, September 30, 2023
Date: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital...
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