Rett Syndrome Europe

Rett Syndrome patient registry

Business EN ↓ 4 episodes

Rett Syndrome is rare - and in rare diseases, every person counts. Introducing rettX, the European Rett syndrome registry led by families and coordinated by Rett Syndrome Europe. We explain why reliable data matters, how the registry works, and how families can participate in a simple, secure, and transparent way. A space to understand how individual action can create collective impact for the Rett community across Europe.

Author

Rett Syndrome Europe

Episodes

[ES] Datos, Confianza y el Papel de las Familias 10.01.2026 14:31

En este episodio profundizamos en el propósito y el funcionamiento de rettX , el registro europeo del Síndrome de Rett liderado por familias. Hablamos de por qué los datos son fundamentales en una enfermedad rara, cómo funciona el registro paso a paso - incluida la importancia de subir un diagnóstico - y qué medidas garantizan la privacidad y la confianza. Una conversación pensada para madres, pad...

[ES] Por qué contar importa en el Síndrome de Rett 10.01.2026 1:34

En las enfermedades raras, cada persona cuenta. En este episodio introductorio explicamos qué es rettX , el registro europeo del Síndrome de Rett impulsado por las familias, y por qué contar con datos fiables es clave para dar visibilidad, apoyar la investigación y mejorar la defensa de derechos. Un primer acercamiento claro y cercano para entender por qué registrarse es un paso sencillo con un im...

[EN] Data, Trust, and the Role of Families 10.01.2026 12:21

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 thoughtf...

[EN] Why Every Person Counts 09.01.2026 1:41

Rett Syndrome is rare - and in rare diseases, every person counts. In this first episode, we introduce rettX , the European Rett syndrome registry led by families and coordinated by Rett Syndrome Europe. We explain why reliable data is essential for visibility, advocacy, and research, and how families can participate in a simple, secure, and transparent way. A clear and accessible starting point f...