Rare Library: Rare Disease Awareness Around the World

To promote awareness of rare diseases from an early age, the Rare Library project aims to make illustrated books accessible in multiple languages for children around the world. This collaborative initiative relies on a network of national patient alliances to ensure that each book is culturally adapted and reaches the families who need it most.

Educating Young Readers Through Illustrated Stories

The Children of Genetics collection, developed by author Sonia Goerger and illustrator Élodie

Garcia,features illustrated stories that address important topics such as disability, diversity, diagnostic journeys, and family solidarity. These books are designed as conversation tools for children, parents, and professionals alike, helping foster understanding and inclusion of people living with a rare disease.

Meaningful Collaboration with National Alliances

To ensure faithful and culturally relevant translations, the project works closely with national rare disease alliances across Europe. Their expertise and direct connection to local communities are essential in adapting the books to specific cultural contexts and ensuring they are distributed where they are most needed.

Georgia: A First International Milestone for Rare Library

The Rare Library project is already gaining momentum. One of the books in the collection, Merlin the Little Feline, which addresses the theme of diagnostic delay, is now available in Italian, Georgian, Malay, and Swedish. Available in PDF, EPUB, and printable formats, the book has been designed to meet diverse reader needs and to support long-term accessibility.

“It was a great surprise that Georgian rare disease families were so much interested.”
— Zhana Chokheli, President of the Georgian Alliance for Rare Diseases

The Georgian edition has had particular success. The Georgian Alliance for Rare Diseases hosted a launch event that brought together over thirty children for a reading and activity session. More than 100 copies have already been distributed across the country, and the event received coverage on regional television—highlighting the strong local impact of the initiative.

Interested in Joining the Initiative?

Rare Library aims to expand its network and offer these books in even more languages and countries. Organizations interested in contributing to the translation and dissemination of these resources in their region are encouraged to get in touch.