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The annual Reverse Rett LEAP Conference brings together leading clinicians, researchers, and families to explore the latest advancements in Rett syndrome management and emerging treatments.
This year’s event will span a whole weekend. Sessions will be broken down into three main parts, including presentations and Q&A panels on the following topics:
Saturday morning: What regular health assessments are vital for individuals with Rett syndrome at baseline and throughout the lifespan, Understanding Autonomic Dysregulation In Rett syndrome, Double Trouble in Rett syndrome (implications when people have Rett and another diagnosis as well), Symptoms not to overlook, symptoms Q&A panel.
Saturday afternoon: Emerging treatments for Rett syndrome, including presentations from industry partners, Consenting to Gene Therapy Trials-why Personal Welfare Deputyship is an important consideration for UK families, Emerging treatments Q&A panel.
Sunday morning: Wellness sessions for families and caregivers, Presentation of factors leading to respiratory/pulmonary complications., Prevention and management of pulmonary complications including prevention of aspiration, respiratory insufficiency and need for NIV to treat this, sleep issues which can be helped by NIV use, Respiratory Q&A panel.
Speakers and Facilitators: Faye Bolan, Ph.D., Matthew Billingsley, Dr. Daniel Lumsden, Dr. Ram Kumar, Dr Katherine Martin, Professor Paramala Santosh, John H. Sharpe, Jatinder Singh, Ph.D., Professor Girish Sharma, Gary Chambers and Julie Tod.
