sábado, 28 de febrero de 2026
Rare Disease Day 2026 is here and so is our latest spotlight edition!
https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=b226070d-f1dd-4177-bfbc-65a7f9ba2588
Our flagship Rare Disease Day 2026 spotlight edition is here—bringing you a deep dive into the global movement transforming care, research and advocacy for Rett syndrome
We are proud to share the voices of leading experts, clinicians and advocates who are moving beyond the status quo:
Global progress: Insights into the first international guidelines for communication in Rett syndrome (Dr. Gillian Townend) and the pivotal meeting that brought Rett to the heart of the European Parliament (Dr. Nadia Bahi-Buisson).
The future of data: Introducing Rett X, the new European patient registry uniting families, clinicians and researchers for faster, more ethical clinical trials (Pedro Rocha).
Care beyond medicine: Examining the full 'Burden of Illness'—including the emotional and financial strain on families—and the call for policy reform (Dr. Mariëlle van den Berg).
Innovation in assessment: How systematic home video capture is revolutionising clinical assessment, outcome measures and future decentralised trials (Professor Jenny Downs).
The power of early intervention: A look at the hunt for "hidden" early biomarkers (Peter Marschik) and the importance of multidisciplinary, connected care (Erin O’Connor Prange & Dr. Giulia Prato).
You can view this publication from a desktop, laptop, mobile or tablet and it is packed with interactive links so you can enjoy the best possible experience when engaging with the content. And don't forget you can also view from our website at any time along with lots of other great digital content.
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