partners with ucb

We are pleased to share that ORSA Canada is officially partnering with UCB as part of its global patient advocacy efforts for Rett syndrome.

This is an exciting step forward for our Canadian Rett community. Four clinical trial sites in Canada are expected to become active as the study moves through the approval process. We will share more information as updates become available.

This Phase 3 clinical study is evaluating fenfluramine hydrochloride (FINTEPLA®), an investigational therapy, compared to placebo. The study is designed to assess the efficacy and safety of fenfluramine in individuals living with Rett syndrome, with the goal of better understanding its potential impact on symptoms and quality of life.
ORSA Canada is proud to work alongside patient advocacy organizations from around the world to help ensure the voices of families are represented throughout this journey.

We look forward to supporting our community and will provide more details when participant recruitment begins.
To learn more about the study, including the planned Canadian trial locations, visit: