[EN] Why Every Person Counts

from Rett Syndrome patient registry · host Rett Syndrome Europe

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.

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This episode is 1 minute long.

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This episode was published on January 9, 2026.

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