Kerry Wong

We are excited to share that Sarah William’s APBD journey is featured in the newly published book, Kaleidoscope: Rare Disease Stories, by Kerry Wong.

The stories featured in this book are firsthand narratives from individuals across the globe, each shedding light on the challenges and triumphs of living with a rare disease.

​​Kerry Wong shared, “I was diagnosed with Sarcoidosis, when I was 40, after an 8-year search for answers. My passion for advocacy led me to create this book and help others recognize the strength and value of their own voices.” 

The book features 60 rare disease stories from patients and caregivers around the world. The patients and caregivers bravely share their journey to diagnosis, what they’ve learned, how they’ve grown, changed, and connected with others, how they embrace life, and more. 

Sarah, who lives in the UK, reflected, “I shared my journey in this book because, as long as I am able, I want to help to cultivate awareness of APBD, in both the medical and wider general communities. Our disease may be rare, but the small number of APBD patients in no way diminishes the devastating effects APBD has on our individual lives and on the lives of our loved ones.”

Sarah added, “I want to share my personal story to help bring understanding to the reality of life with APBD to encourage knowledge and compassion so that more people can be correctly diagnosed and that ultimately we will have a treatment or a cure..”

Every story exemplifies strength, courage, creativity, humor, and so much more. Kerry a dedicated writer, patient advocate, and a rare disease warrior amplifies these voices, fostering empathy and understanding.


Kerry Wong is a writer and patient advocate. Before her diagnosis with sarcoidosis, arthritis, and other comorbidities, Kerry dedicated years to volunteering and nonprofit work. Even after her diagnosis, she persists in her advocacy efforts to make a difference. Kerry’s passion for advocacy led her to create Kaleidoscope: Rare Disease Stories, to help others “recognize the strength and value of their own voices.”

To order your copy of Kaleidoscope: Rare Disease Stories, click here.

All proceeds from her book will benefit the National Organization for Rare Disorders.