[EN] Data, Trust, and the Role of Families

In this episode, we take a deeper look at rettX, the European Rett Syndrome registry led by families and coordinated by Rett Syndrome Europe.We explore why reliable data is essential in a rare disease, how the registry works step by step, and why trust, privacy, and transparency are at the heart of the project - including the importance of uploading a diagnosis to ensure data quality.A thoughtful conversation for parents and caregivers who want to understand the purpose and impact of rettX before taking part, and how individual actions can lead to meaningful, collective change across Europe.