Rare Disease Stories

Kaleidoscope: Rare Disease Stories

Kaleidoscope Rare Disease Stories is a collection of true, first-person stories from people around the world living with a variety of rare diseases. The writers in this book, like the rare diseases they live with, span all ages, ethnicities, genders, religions, and ability levels.

Each story shares an aspect of their experience: the journey to diagnosis, what they’ve learned, how they’ve grown, changed, and connected with others in the rare community, how they embrace life, and more. These rare warriors show strength, courage, creativity, humor, and so much more. They are living proof that even through the darkest of times, through the unthinkable, through the fear – there is always hope.

Kaleidoscope: Rare Disease Stories

Purchase this book on Amazon to read first-hand accounts while also supporting the rare disease community.

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Kerry L. Wong is fellow writer at BioNews and writes a column on Sarcoidosis News titled Float Like a Buttahfly. She is also a patient advocate living with arthritis, sarcoidosis, and other comorbid conditions. Though she is disabled due to her own illnesses, she now focuses her energy on raising awareness, advocating for, and supporting people with diseases like hers.

Her book was released on Rare Disease Day 2024. The net proceeds from sales of this book will be donated to the National Organization for Rare Disorders (NORD).

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