Rare Disease Day takes place on Sunday 28th February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

There are over 300 million people around the world living with a rare disease but despite this, there is no cure for the majority of rare diseases, and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

The key message for Rare Disease Day 2021 is that: Rare is many. Rare is strong. Rare is proud. Rare Disease Day 2021 calls for action for people living with a rare disease to have equal opportunities to realise their potential for participation in family, work and social life. The long-term goal of Rare Disease Day over the next decade is increased equity for people living with a rare disease and their families


In the run up to Rare Disease Day, IPWSO is looking for stories to tell about what life is like for people with PWS. IPWSO welcomes stories from people with PWS, carers and families. Send in your story and photo using this form!


There are many ways to get involved with Rare Disease Day 2021, find out more on the official website.