Nurse JENNY DECKER is Sailing Around the Globe to Raise Awareness for Charcot-Marie-Tooth Disease – UPDATE

In June 2023 Jenny Decker took time out from her job as a trauma nurse and sailed out of Kona, Hawaii, beginning her solo voyage around the globe. Jenny’s mission…

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The story of Laura and Martina and a rare disease called GACI with two very different outcomes.

This article is written by Enrico Orzes and originally published on Osservatorio Malattie Rare (OMaR).  It has been translated from Italian. Patient Worthy is grateful to the team at OMaR…

Continue Reading The story of Laura and Martina and a rare disease called GACI with two very different outcomes.

The Importance of Who, What, When, Where, and How in Your Family Health History: How to get the most out of your genetic counselor

When I ask a patient about their family history, I do so to offer the most accurate risk of disease I can for them or their children. So when a…

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Sierra Domb on Visual Snow Syndrome: A Journey of Resilience, Medical Trauma, and Advocacy

In this insightful article, Sierra Domb, Founder and CEO of the Visual Snow Initiative (VSI), a nonprofit organization dedicated to raising global awareness, providing education and resources, advocating for patients,…

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FDA Approves the first Mesenchymal Stromal Cell Therapy to Treat the Graft Versus Host Disease in Adults and Children

Mesoblast Biotechnology Company has received FDA approval for its Ryoncil therapy as the first of its kind to be approved in the United States. The therapy has been developed to…

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