It’s incredibly important to raise rare disease awareness, spread education, and contribute to a more inclusive and equitable world. One of the best ways to start? Through children. Teaching the younger generation, and instituting these values within them, can lead us towards a better future. According to the Times of Malta, Malta’s National Alliance for Rare Diseases recently created a children’s book called Special Just Like You and Me to help teach children more about identity, inclusion—and how we’re all different (but still special!).
The National Alliance for Rare Diseases developed and published Special Just Like You and Me in conjunction with the Swiss Orphancare Foundation. Within the country, the book will be available—free!—at primary schools.
In a conference that followed the book’s official launch, various stakeholders within the rare disease community shared how impactful storytelling can be. It can strengthen education and equity, spur research, and increase advocacy for patient support. Other topics discussed at the conference include the need to better educate medical students and professionals on rare diseases, and the need for increased collaboration between different organizations.
Other Rare Disease Focused Childrens’ Books
Outside of Special Just Like You and Me, there are a number of other books about rare diseases that can be shared with children! These include:
- Extraordinary! A Book for Children with Rare Diseases. Written by Evren and Kara Ayik, Extraordinary! celebrates the beauty in the diversity of our varied experiences. Evren also shares his perspective of growing up with an ultra-rare disease.
- Just Like Me!: A Book About a Girl with a Rare Disease. Based on Anne Rugari’s daughter Gina, who had Krabbe disease, this book encourages a deeper understanding of different abilities and the importance of inclusion.
- ABCs of Sickle Cell Disease. This book, designed for children between ages 5-12, serves to unpack and uncomplicate some of the terminology of a sickle cell disease diagnosis. From educating about what sickle cell disease is, to its vivid imagery, this book can help inform families, caregivers, patients, and friends alike.
