Maaliskuussa 17.-18.3.2023 oli Rett Syndrome Europe Network Support and Research Event, joka sisälsi useita asiantuntijaluentoja webinaareina. Nyt olemme saaneet webinaaritallenteet suomeksi tekstitettyinä jaettavaksi!


Day 1 - Basic Science / Translational Research

Rett Syndrome: The Road from Recognition to Treatment - Jeffrey Neul


Gene Therapy: Hope, Myth and Difficulty - Jean-Christophe Roux


Human Stem Cell -based Models for the Study of Rett Syndrome - Sonia Guil


Genetic Therapy Approaches in Rett Syndrome - Stuart Cobb


Neurogene Update: NGN-401: A Self regulating Gene Therapy for Rett Syndrome - Stuart Cobb


Neuren Update: Trofinetide in Rett Syndrome - Nancy Jones


Taysha Update: An Investigational Approach to Gene Therapy for Rett Syndrome - Benit Maru


Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey - Walter Kaufman


Clinical Trial Registries and Databases - Daniela Tropea


Appropriate Involvement of Patients - Francois Houyez


Family Contact and Engagement: Why and How  - Becky Jenner



Day 2 - Family-Orientated / Therapy Support


I Can't Get No Sleep... - Karen Spruyt


Epilepsy in Rett Syndrome - Aglaia Vignoli


Control of Breathing - Ana Abdala


Gastrointestinal Myths and Misconseptions in Rett Syndrome - Kathleen Motil


Identifying and Managing Emotional, Behavioural Autonomic Dysregulation in Rett Syndrome - Paramala Santosh


Physical Therapy Interventions in Rett Syndrome - Meir Lotan


Communication Research and the Rett Syndrome Communication Guidelines - Gillian Townend


Communication Continued: Well-being and Emotional Competence - Helena Wandin


Occupational Therapy: Role in Rett Syndrome - Pamela Diener


Music Therapy and People with Rett Syndrome - Linn Johnels