On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact.
This year is particularly special as Rare Disease Day falls on a leap year so it is even more rare falling on the 29th February 2020.
Our families and professionals always like to get involved to highlight this complex and ultra-rare condition, Alstrom Syndrome. You can take part by sending in your photos of how you are celebrating the day.
You can find out what is going on around the world, and what events are happening near you on the Rare Disease Day website, click HERE