Events

Sep
30
Sat
IRSF RettEd Day with Montefiore CoE @ Tri-State Rett Syndrome Center at Montefiore
Sep 30 @ 9:00 am – 5:00 pm
Date: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital at Montefiore (Bronx, New York) 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. REGISTER & MORE INFORMATION
Oct
6
Fri
WUSM/SLCH Annual Family Education Symposium @ Washington University School of Medicine
Oct 6 @ 3:00 pm – 6:00 pm
Date: Friday, October 6, 2023 Time: 3:00 – 6 p.m. CT Location: Washington University School of Medicine or Virtually Download the Registration Flyer Register now for the Annual Family Education Symposium, part of the Rett Spectrum Conference Series brought to you by Washington University School of Medicine and Children's Hospital St. Louis. It's free to attend the symposium, but registration at the link below is requested. REGISTER & MORE INFORMATION
Jun
19
Wed
ASCEND 2024 Rett Syndrome National Summit (Family Conference) @ The Westin Westminster
Jun 19 – Jun 22 all-day
Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Come join us in the Mile High City as we ascend to greater heights at The Westin Westminster. This location offers sweeping views of the Rocky Mountains and is conveniently situated just 15 minutes from both Denver and Boulder. Featuring a lineup of expert speakers, updates on Rett syndrome research, and opportunities to connect with your Rett community, ASCEND 2024 is not to be missed. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. REGISTER & MORE INFORMATION

Thank you to our sponsors:

Presenting Sponsor: Platinum Sponsors:
Bronze Sponsors:
Anavex Life Sciences
Anovo
Sep
10
Tue
RettEd Webinar | Transitioning with Confidence: Enhancing Communication in Academic Settings
Sep 10 @ 4:00 pm – 5:00 pm
Date: Tuesday, September 10th Time: 4-5 pm ET INFORMATION & REGISTRATION Transitioning with Confidence: Enhancing Communication in Academic Settings The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session focusing on supporting students’ communication needs during school transitions. During this webinar, Emily Cleer Estades, a licensed SLP and mother to a 24-year-old with Rett syndrome, will share her insights from both professional and personal perspectives. She will discuss challenges and successes, offering advice on advocating for students and ensuring successful IEP and transition meetings. Then, Andrea Etkie, also a licensed SLP and Rett syndrome researcher, will present evidence-based strategies and innovative approaches. She will emphasize the importance of including students in transition discussions to ensure their voices are heard and their needs are met. This session aims to combine professional expertise with personal experience to enhance communication support during academic transitions for students of all ages with Rett syndrome, with emphasis on preparing for Adulthood Transition conversations that begin around age 14. Join us for an informative and engaging session! Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Oct
24
Thu
RettEd Webinar | Epilepsy Treatments in Rett Syndrome
Oct 24 @ 1:00 pm – 2:00 pm
Date: Thursday, October 24th Time: 1-2 pm ET REGISTER NOW Epilepsy Treatments in Rett Syndrome The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome. Guest Speaker: Robin Ryther, M.D., Ph.D., Associate Professor, Pediatric Epilepsy; Director, Rett Spectrum Clinic; Division of Pediatric and Developmental Neurology; Pediatric Epilepsy Center at Washington University and St. Louis Children's Hospital Department of Neurology This session will include a discussion of medication options but also non-medication options including special diets, surgical options, and supplements such as CBD oil. Dr. Ryther will also review special circumstances specific to Rett Syndrome to be considered. This information is appropriate for patients with Rett syndrome of all ages. Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
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
Apr
5
Sat
IRSF RettEd Day @ Nationwide Children's Hospital
Apr 5 all-day
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
IRSF RettEd Day @ Children's Hospital Los Angeles
May 3 all-day
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!
Jul
9
Wed
2025 RettAway
Jul 9 – Jul 12 all-day
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
IRSF RettEd Day @ Boston Children's Hospital
Sep 13 all-day
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!