Rare Disease Day: Discover Rare Diseases from A to Z

For Rare Disease Day, we’re proud to announce the publication of the second volume of Rare Diseases from A to Z!

Developed in collaboration with the Rare Disease Expertise Platform of Bourgogne-Franche-Comté (PEMR-BFC), this book raises awareness on the diversity of rare disease. Thanks to the illustrations by artist Matthieu Méron, each description is accompanied by a visual and symbolic representation, offering a unique perspective on these conditions.

This book is a powerful tool to inform, raise awareness, and educate about rare diseases. It aims to improve understanding of often little-known conditions, facilitate dialogue, and encourage earlier diagnosis. Accessible to everyone, the book combines scientific accuracy with artistic interpretation, making it an educational resource for all knowledge levels.

By putting words and images to these conditions, we contribute to breaking the isolation of patients and raising collective awareness.
Céline Colombier-Maffre, Manager of Publications

By giving a voice and visibility to these too-often forgotten diseases, this book contributes to strengthening the recognition of patients and their families. It is part of a broader mission: to create connections, foster awareness, and build a genuine community around rare diseases – which today affect nearly 300 million people worldwide.

Together, let’s make the voice of rare diseases heard.

About Rare Disease Day

Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a crucial role in building an international rare disease community—multi-disease, global, and diverse, yet united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 February in leap years—the rarest day of the year). It was established and is coordinated by EURORDIS in partnership with over 70 national alliance patient organisations. The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.

-> Read Volume 1 of Rare Disease from A to Z