Events

Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm

We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options.

We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required.

Information & Registration

Apr
23
Fri
RettEd: What Hurts? Part 2: Addressing and Treating Pain in Rett syndrome
Apr 23 @ 1:00 pm

How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children’s, and Dr. Scott Schwantes of Children’s Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required.

If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg

Information & Registration

Sep
28
Wed
9th World Rett Syndrome Congress
Sep 28 – Oct 1 all-day

9th World Rett Syndrome Congress in Australia

Dates: 28th Sept to 1st Oct 2022

9th World Rett Syndrome Congress has been postponed due to COVID until 2022.

Congress venue
The QT Hotel, Gold Coast, which is located in Surfers Paradise, Queensland, will remain as the Congress venue.

Presenters
Presenters who originally accepted RSAA’s invitation to speak at the Congress are being notified of the latest postponement and will be reinvited. Hopefully, the revised dates will not affect their availability.
Congress website

Work continues on building the Congress website https://rettworldcongress.org to a point where it will meet the information needs of potential attendees. Online registration for the Congress is now open which may be of particular interest to Australian families who have included, or wish to include, coverage of the registration fees in their National Disability Insurance Scheme (NDIS) plans.

https://rettworldcongress.org

An online abstract submission portal has been completed but won’t be available for submissions until early 2022.