CONNECTING THE WORLDWIDE RARE DISEASE COMMUNITY WITH 100 DAYS TO RARE DISEASE DAY 20 November 2021, Paris Today marks the launch of the global awareness… Continue reading Press Release: 100 Days to Rare Disease Day 2022

The rare disease community and its supporters come together to share the message: Rare is many. Rare is strong. Rare is proud! Today, 28 February,… Continue reading Many, Strong, Proud: Connecting Rare Disease Day Across Continents

The official Rare Disease Day 2021 video launches today and is already available in 36 languages, kicking off the international patient-led movement that puts rare diseases… Continue reading Out Now! Rare Disease Day 2021 video is here!

For Charlotte from the UK, who has a rare genetic disorder called Osteogenesis imperfecta, sport has been a really important part of her coping mechanism.… Continue reading How sport can be a valuable therapy for rare diseases

6 continents, 6 portraits, 6 heroes, 6 lives. Rare Disease Day shines a light on the global and diverse community of over 300 million people… Continue reading Meet our heroes!

If you have a rare disease, the search for a diagnosis can often feel like the longest detective investigation –  with no clues, lots of… Continue reading Long diagnosis, misdiagnosis, or no diagnosis – how rare diseases go under the radar

We are excited to announce our Rare Disease Day webinar series, which started on Wednesday 21st October. In these webinars, a range of topics are covered… Continue reading Rare Disease Day’s new webinar series!

For some, the day we learned of our rare disease diagnosis is a happy day. Odd, isn’t it? Imagine having your closest friends and family… Continue reading “No one would believe me”: A common feeling for people living with a rare disease

Art events are powerful tools to raise awareness for people living with a rare disease. This year Rare Disease Day saw a wide variety of… Continue reading The power of art – painting a brighter future for people living with a rare disease