Rare Disease Day is on 29 February 2020
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!
Surviving A Pandemic Is
Maggie - United States
Cavernous lymphangioma
Life with Episodic Ataxia
Darcy - United States
Episodic ataxia type 2
My name is Darcy & this is my story "Life with Ataxia" my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child. I was late to walk, talk & use motor
From fear to faith....
Shari Mcfarkand - United States
Amyliodosis Al
My husband was this amazing athlete, who turned his love for track into coaching, and working with troubled youth.  Always healthy, one day he was fine and the next he just wasn't.  We moved from cold,
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