International Rett Syndrome Foundation

The photos are in! Check out some highlights from the ASCEND 2024 Rett Syndrome National Summit, presented by Acadia Pharmaceuticals Inc., or follow these links to view the full photo albums from this year's event: Scientific Meeting: https://lnkd.in/dpstY-WM Family Conference: https://lnkd.in/dptBuitV Thank you to everyone who submitted photos!💜

Don’t miss this LIVE roundtable discussion developed in partnership with National Organization for Rare Disorders & International Rett Syndrome Foundation! Hear panelists discuss their experience integrating novel treatments for #RettSyndrome (#RTT) into clinical care 👉 https://bit.ly/4cRCzSY 🏷️ #FreeCME #CME #MedicalEducation #MedEd #IRSF #CoE 

Developed in collaboration with Rett syndrome experts throughout the U.S., IRSF is proud to present the new Rett Syndrome: Comprehensive Care Guidelines and Quick Reference Guide. This medical resource is intended to be used to support a meaningful partnership between caregivers and the physicians, nurses, and therapists who are involved in the care of an individual with Rett syndrome. Download the guidelines or share this link with your medical provider today: https://lnkd.in/g-Fr4xrb. IRSF would like to express gratitude to the Rett syndrome Centers of Excellence and experts who volunteered time and effort to develop this list of recommendations.

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IRSF is proud to announce the designation of three new clinics as Centers of Excellence: CHOC Children's, Rady Children's Hospital-San Diego, and Nicklaus Children's Hospital in Miami, the first clinic to receive the designation in Florida. These clinics join the 18 other clinics across the U.S. that received renewed designation last month for their continued commitment to Rett syndrome care and research. Learn more about the expanded network here: https://lnkd.in/e_QxeXAk

The Diagnostic Experience of Male Rett Syndrome is an online survey that collects information on the lived experiences of parents or caregivers of boys with Rett Syndrome from around the world. Funded in part by IRSF, this study will examine key information including the process of getting a male Rett syndrome diagnosis, your son’s systems of care, and your priorities for his health needs. The Diagnostic Experience of Male Rett Syndrome study is available to parents or caregivers of boys (alive or passed) with Rett Syndrome. Learn more about this study and how to join here: https://lnkd.in/gKgweNAp Thank you to the families, doctors, and researchers from across the world who have joined forces to continue to advance research and advocacy for males with Rett Syndrome.

Still wondering about our My Rett Ally app? Check out this interview with Yesenia, mom to Alessandra who was diagnosed with #Rettsyndrome at 29 months old. When she decided to start her daughter on DAYBUE, the first FDA-approved treatment for Rett syndrome in the U.S., she turned to the My Rett Ally web app, powered by mejo, to keep track of Alessandra's progress on the new treatment. "I needed something to help me keep track of everything without driving myself crazy," Yesenia admits. "And let me tell you, this app. It's been a game-changer." Read the whole story at the link!

We are proud to officially announce the expansion of our scientific leadership team! Please join us in welcoming Drew Jones MD, MPH, MBA and Nupur Garg, PhD to lead our clinical development and research efforts respectively. “With the dramatic advancements in Rett research these past few years, IRSF believes that this expansion will better serve our Rett syndrome community, bringing more treatments more quickly to those who are living with Rett syndrome,” said IRSF CEO Melissa Kennedy. “I am so thrilled to have the expertise and leadership of Drs. Garg and Jones on our team as we continue to expand our scientific strategy to seek out solutions for all.” Read the full release and learn more about the team here: https://lnkd.in/gAruj-Qz

We are still in awe of what we experienced together at the ASCEND 2024 Rett Syndrome National Summit last week! Presented by Acadia Pharmaceuticals Inc., the event brought together families, clinicians, researchers, industry members, and Rett associations from around the world for an experience that is truly like no other. Over the course of the 5-day scientific meeting and a family conference: - We saw more than 600 attendees walk through the doors, who traveled from 16 countries, 39 U.S. states plus D.C., and ranged in age from 23 months to 86 years old. - We learned from nearly 60 informative, educational, and, at times, emotional, presentations and panels, 60 scientific posters, and 27 exhibitors and sponsors. - We handed out 260 purple roses, reminding us that though the journey may be hard at times, HOPE is mandatory. Thank you to everyone who presented, exhibited, and volunteered. Thank you to our sponsors: Acadia Pharmaceuticals Inc., Neurogene Inc., Taysha Gene Therapies, Anavex Life Sciences, AnovoRx, and DepYmed, Inc. And thank you to everyone who took the time to attend and spend these few days with our Rett community. We are beyond grateful! 💜💜 We can't wait to share photos, videos, and more from our time together in the coming weeks. Do you have photos for our ASCEND photo album? Upload them here: https://lnkd.in/gjFcmYfA

We can't wait to learn more during the Taysha Gene Therapies podium presentation at the IRSF Rett Syndrome Scientific Meeting, happening in Colorado now. Thank you for working to create a world without Rett!