Available in hardcover and paperback. Now in seven languages!

Extraordinary!
Extraordinary!
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Resources on Rare Disease

Guide for Teachers

Six Lessons for Rare Parents

Six Lessons for Rare Parents

Insights for reading the book Extraordinary! to children without rare diseases. By Kara Ayik, educator, parent and co-author of Extraordinary! A Book for Children with Rare Diseases.

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Six Lessons for Rare Parents

Six Lessons for Rare Parents

Six Lessons for Rare Parents

A video presentation by Kara Ayik, educator, parent and co-author of Extraordinary! A Book for Children with Rare Diseases. 

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Courageous Parents Network

Six Lessons for Rare Parents

Courageous Parents Network

Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. 

courageousparentsnetwork.org

Global Genes

Global Genes

Courageous Parents Network

Global Genes connects, empowers and inspires the rare disease community.

globalgenes.org

RareConnect

Global Genes

RareConnect

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.

rareconnect.org

About Face

Global Genes

RareConnect

Our mission is to promote and enhance the emotional and mental well-being of individuals with facial differences and their families 

aboutface.ca

Rare Youth Revolution

Rare Revolution Magazine

Rare Revolution Magazine

A global news and opinion, digital magazine platform, dedicated to powering up the voices of the youth rare disease community.

Rare Youth Revolution

Rare Revolution Magazine

Rare Revolution Magazine

Rare Revolution Magazine

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.

Rare Revolution

Six Lessons for Rare Parents

Video from Kara & Evren Ayik

About the Book

Extraordinary! A Book for Children with Rare Diseases

Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader’s developmental needs. 



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