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