Rett Syndrome patient registry
Rett Syndrome EuropeRett 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 Ret... more
| Publishes | Daily | Episodes | 4 | Founded | 8 days ago |
|---|---|---|---|---|---|
| Categories | BusinessNon-Profit | ||||
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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... more
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 ... more
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 t... more
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... more
Key Facts
Chart Rankings
How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.
Apple Podcasts | #151 |  United Kingdom/Business/Non-Profit |
Apple Podcasts | #9 |  Spain/Business/Non-Profit |
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Listeners, social reach, demographics and more for this podcast.
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Rett Syndrome patient registry launched 8 days ago and published 4 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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