lunes, 12 de octubre de 2026
The latest edition of RARE Revolution Magazine has dropped—The RARE-linked edition is now LIVE!
https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=a879f992-d7b6-4577-a1e2-3ba26643b60c
The community turning the tide for RARE and X-linked disorders
The Autumn 2026 edition of RARE Revolution Magazine (Issue 037) has landed!
This edition focuses on X-linked genetic disorders, a category encompassing over 500 conditions linked to variants on the X chromosome. The edition highlights a pivotal shift across the rare disease ecosystem—contrasting the challenges of diagnostic odysseys, insurance coverage battles and adult transition gaps with groundbreaking progress in targeted therapies, parent-led translational research and global community building. Above all, it celebrates the extraordinary strength and everyday joy found within rare disease families.
Featuring:
Great expectations: reframing life with Renpenning syndrome – An interview with rare parent and advocate Jessica Nunley on releasing preconceived expectations, navigating early intervention, and advocating for her son Gryffin.
60 years of fast-paced progress in Rett syndrome – Professor Dimitrios I. Zafeiriou reflects on six decades of evolution in Rett syndrome care, moving from basic symptom management to targeted treatments and gene therapy trials.
The heart, soul, and glue of Wiskott-Aldrich syndrome – The story of how Mike Skrynecki and Dr Sumathi Iyengar co-founded the Wiskott-Aldrich Foundation, rescued an almost-abandoned gene therapy programme and reshaped global care standards.
Living on a "cliff edge": fragile X and the fight for Austin’s future – Georgina Fane shares the realities of raising her 17-year-old son Austin and the looming systemic battle surrounding transition into adult care services.
Plus so much more, including – Menkes disease, CASK, Barth syndrome, XLP1, XLA, Fabry disease, Aicardi syndrome and much more.
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.
www.rarerevolutionmagazine.com
https://rarerevolutionmagazine.com/
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