A COFFEE CONVERSATION WITH MY RARE AILMENT A Rare Ailment (RA) is identified, that affects fewer people across a broad range of possible disorders. Can… Continue reading A COFFEE CONVERSATION WITH MY RARE AILMENT
Results for "light up for rare"
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Do you know the meaning for rare is “extraordinary.” Yeah, I’m rare, but I’m also extraordinary. My name is Nabila, female, age 35, with parahemophilia… Continue reading Invisibly Rare
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!
Hi, I’m Melissa Quekel 23 years old and I live in the Netherlands with my fiance Bart. When I was 1 year old, I was… Continue reading Living with a rare metabolic 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!
Each year I “celebrate” Rare Disease Day which was February 29th. Celebrate is a weird word to describe it, but it a day that I… Continue reading The invisible group