A global grassroots campaign led by people living with a rare disease and their families has successfully secured the adoption of the first-ever UN Resolution… Continue reading Resolution for People Living with a Rare Disease adopted by the United Nations
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