Rett Syndrome patient registry

Rett Syndrome Europe
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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.

Episodes

  1. [ES] Datos, Confianza y el Papel de las Familias

    JAN 10

    [ES] Datos, Confianza y el Papel de las Familias

    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, padres y cuidadores que quieren entender el “por qué” antes de participar y contribuir al futuro de la comunidad Rett en Europa.

    15 min
  2. [ES] Por qué contar importa en el Síndrome de Rett

    JAN 10

    [ES] Por qué contar importa en el Síndrome de Rett

    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 impacto colectivo real.

    2 min
  3. [EN] Data, Trust, and the Role of Families

    JAN 10

    [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.

    12 min
  4. [EN] Why Every Person Counts

    JAN 9

    [EN] Why Every Person Counts

    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 for understanding why joining the registry matters.

    2 min
  • 4 Episodes

About

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.

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