Beyond Borders: The Game-Changing Promise of a Global Patient Registry in Shaping Rare Disease Research

About this article

This article tells the story of the Global Angelman Syndrome Registry and the importance of building a truly global resource for the Angelman syndrome community.

It explores the role of the Registry in bringing together information contributed by families around the world, helping researchers better understand Angelman syndrome and supporting research into future treatments.

The article also reflects on the importance of making rare disease registries accessible across countries, languages and communities so that the data used to inform research better represents the global Angelman syndrome population.

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Read Beyond Borders in the July 2023 edition of INSPIRE.