Rett Syndrome Europe Network Support and Research Event webinaaritallenteet

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