Event Summary

For the 15th edition of Rare Disease Day, more than 100 countries and regions joined their voices, organising over 600 events worldwide.

This year’s campaign welcomed five new National Alliance partners: Ivory Coast, Kenya, Greece, Kazakhstan, and Portugal.

As part of the Global Chain of Lights, more than 650 buildings were illuminated to show support for Rare Disease Day, raising awareness for people living with rare diseases and spreading hope and colour across the world.

The 2022 official video was made available in 45 languages.

The Rare Disease Day website featured portraits of individuals from around the world, highlighting the diversity of the global rare disease community.

By sharing stories from six continents and representing 16 different diseases, the Rare Disease Day website showcased the strength and diversity of the global community.

Additionally, School Toolkits and Lesson Plans were translated into more than 20 languages and downloaded across all continents, helping to educate and engage young people worldwide.

Media Coverage

Social Media highlight

A successful series of webinars provided information and support throughout the campaign, translated into eight languages and receiving over 10,000 views on Facebook.

The Rare Disease Day Facebook page reached over 900,000 people, while Instagram followers doubled since 2021.

Downloads of Rare Disease Digital Materials increased by 66% compared to 2021.