Events

Oct
15
Tue
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RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

Newly Published Communication Guidelines for Rett

Tuesday, October 15, 2019
1:00pm
Webinar

Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts.

Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards our collective hope for better treatments and ultimately a cure for Rett syndrome.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Registration & Information

Nov
12
Tue
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RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm

Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about it.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.
RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Dec
10
Tue
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RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm

Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children’s Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020.

This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today