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

A real highlight from Rare Disease Day this year was seeing the spectacular sight of buildings and monuments lighting up to raise awareness. From well-known… Continue reading World landmarks shining a light for Rare Disease Day – individual and local efforts send a global message!

Saturday 29 February was the 13th edition of Rare Disease Day. The campaign continues to grow each year since it was first launched in 2008.… Continue reading Thank you for making Rare Disease Day 2020 a success!

Today as thousands of events place take place around the world to mark the occasion of Rare Disease Day 2020, we share a sincere message… Continue reading Solidarity with the rare disease community affected by COVID-19

Rare Disease Day is today, 29 February as it is a leap year. The rarest day of the year dedicated to raising awareness for people living with a rare… Continue reading Today is Rare Disease Day 2020

Lubin, aged 12, is from Juvisy, France and is living with spinal muscular atrophy (SMA) which affects 1-9 in 100,000 people. Diagnostic Journey Around the… Continue reading Meet Lubin