Happy Thursday!
We hope everyone is enjoying this beautiful spring week! This week we’re highlighting a story about a partner of ours that helps support creativity in kids with rare diseases. Next, we have an article that discusses the frustrations and hopes of patients with mastocytosis. This is followed by a look at a gene therapy with a staggering price, and a rare family covered by People Magazine.
Sit back and enjoy this week’s Editor’s Choice.
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Red Fred Project: Helping Chronically Ill Child Authors Publish Their First Books
Red Fred Project is a wonderful friend and partner of ours, bringing joy, magic, and meaning into the world. They help harness a child’s powers as a creative storyteller, producing professionally published illustrated books.
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Finding an Effective Personalized Therapy for Mastocytosis can be Frustrating, but it is Possible
It’s not an easy path to treatment– but there’s reason to hold onto hope.
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First Ever Treatment Approved for Transthyretin Amyloid Cardiomyopathy Will Cost $225,000 per Year
Gene therapy is hugely exciting… but it comes with a price tag.
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These Parents of a Boy With Infantile Neuroaxonal Dystrophy Are Desperate to Save Him
People Magazine brought attention to this rare disease story.
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