Reviews

Phenomenal Read for Rare Disease Families! 

I loved this book!!! I have two daughters with rare diseases (two different rare diseases, actually), and I have been on the hunt for a book that explains the concept of rare diseases/ disorders in a simple, kid-friendly way, and this book was the answer! Extraordinary: A Book for Children with Rare Diseases addresses the idea of identity- what makes you YOU? Then it goes over the basic idea of what rare diseases are, how people may react when they learn about your diagnosis, etc.

One thing I enjoyed was that there were so many different disabilities represented! Rare diseases are just that — rare! I liked that this book could apply to any of the thousands of different disorders.

Hands down, my favorite line was “Your rare disease does not make up your entire identity." This book is SO well done, and the pictures were incredibly diverse and inclusive! 10/10!!!  

Mary Mecham

Director of Disability Book Week

"I loved reading Extraordinary! A Book for Children with Rare Diseases. It really helped me understand what my sister who has a rare disease went through and what people who have similar experiences went through as well. 

It talked a lot about identity and everything that makes it up, like character traits. What I really liked that the authors included is "Your rare disease does not make up your entire identity." I think that's super important for kids who have a rare disease to understand. 

It's also super important for people like me to read, who don't have a rare disease but have a family member or close friend who does. I highly recommend this amazing book to anyone, whether they have a rare disease or not."

Reviewed by Kristen Wells,

age 13, USA

Rare Revolution Magazine, Spring 2022

Thank you for writing such a meaningful book

I started reading this book to my daughter when she was two-and-a-half not knowing she would be diagnosed with Juvenile Idiopathic Arthritis one day. All I wanted her to see was that people have rare diseases and they are amazing too. Anyways, having had read this book really helped her understand that she has a rare disease and explains why she has to get shots and take so much medicine. She even said one night, “I have a rare disease like Evren.” Thank you for writing such a meaningful book. 

Schoolteacher in California