Rett 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

RettEd interative webinars with the experts

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.

Our 2022 line-up features a free 3-part series on Adults with Rett. Register for the 3rd in the series on Quality of Life below. You can also subscribe to our YouTube channel to view past recordings at no charge.

LEARN MORE & REGISTER

 

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.

It’s official – Our next RettEd Day will be at Kennedy Krieger Institute in Baltimore this October!

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RettAways

San Antonio, TX | June 22-25, 2023

Save the date to 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!

Stay tuned for more information!

 

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.

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Thank you to our 2022 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.

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.

Transitioning into Adulthood, Part 1:
Medical Transition

Medical transition is not a one-size-fits-all process, and this workshop-style talk will empower your family to have the best, most family-centered transition of care possible. A must for parents and caregivers of teens and young adults, age 13-30.

Find our full Video Library of RettEd Webcasts on YouTube.

VIEW THE PLAYLIST