Rare Disease Day is on 28 February 2021
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2020 events
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News
The power of art – painting a brighter future for people living with a rare disease
The power of art – painting a brighter future 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 art events around the world engaging all members of the communi...
19 May 2020
World landmarks shining a light for Rare Disease Day – individual and local efforts send a global message!
World landmarks shining a light for Rare Disease Day – individual and local efforts send a global message!
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 landmarks such as the Colosseum and the wor...
09 Apr 2020
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Tell your story!
Paul's story CTD
Gillian - Israel
Limbic encephalitis with LGI1 antibodies
Sadly, since writing Paul's story on Limbic encephalitis anti-LGI1 and neuromyotonia (UMN), we are grieving because he passed away in mid-April this year. I would therefore like to add the following:This
Battle Cry
Nicole - Italy
Systemic mastocytosis
April 23th, 2017. It all started like this, or rather, it made everything worse like this ... Since I was a child I have suffered from muscle and bone pain, often also from gastrointestinal problems, I
Meet Avalon, Young Founder
Erin - United States
Hypophosphatasia
Avalon (Avie) has a rare genetic disease, Hypophosphatasia (HPP), that is characterized by the abnormal development of bones and teeth. Avie, who is all too familiar with HPP, explains it in layman's terms:
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