It’s one week until Rare Disease Day which takes place on Monday 28th February.

Rare Disease Day is, “the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” It was created in 2008 by EURORDIS along with more than 65 national alliance patient organisation partners. This year, there are over 600 events being held for Rare Disease Day with 106 countries involved. The key message for Rare Disease Day 2022 is that: Rare is many. Rare is strong. Rare is proud. 

A rare disease such as PWS affects only a small percentage of the population, but collectively rare diseases are not rare, affecting over 300 million people worldwide. The universal challenges affecting people living with a rare disease must be tackled collectively. 

IPWSO is a part of the rare disease community and proudly supports Rare Disease Day 2022. Anyone can get involved in Rare Disease Day as it is all about raising awareness of rare diseases in order to generate change for the 300 million people worldwide living with a rare disease. The official website has lots of resources and materials to help people raise awareness such as posts for social media or printable posters. 

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!

Head to the Rare Disease Day website to learn more about the day and how you can get involved!