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3 YOUNG BOYS IN SAME FAMILY ARE AFFECTED

My name is Lidia, my husband’s name is Adrien. We are the parents of three beautiful and wonderful boys. And we are here to help… Continue reading 3 YOUNG BOYS IN SAME FAMILY ARE AFFECTED

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Desbuquois Sendromu

Bizim hikayemiz 21.06.2013 yılında doğan oğlum Mithat’ a desbuquois sendromu teşhisi konuldu. Nadir hastalık olduğunu öğrendiğimizde çok üzüldük.Lakin zamanla alışıyor insan.Şu an 4 yaşını geçti… Continue reading Desbuquois Sendromu

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Takayasu arteritis

The world ends when we wanted to end”– Hi! I’m Jackie..mom of 3 married 3 years to my best friend. I got diagnosed this past… Continue reading Takayasu arteritis

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Charcot-Marie-Tooth & Narcolepsy

I’m Tyler and I’m 17. When I was 15 I was diagnosed with both of these. They affect me moderately so I’ve devoted myself to… Continue reading Charcot-Marie-Tooth & Narcolepsy

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Ledderhose disease

Hello, I’m 18 years old and I’ve been dealing with this disease for 10 years. Ledderhose disease (or plantar fibtomatosis) causes the thickening in the… Continue reading Ledderhose disease

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Rare since 12

I am currently 15 years old and am living a fairly normal life. I hang out with my friends, spend time with family, and go… Continue reading Rare since 12

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Ellie Rose, syndrome de kleefstra, microdélétion 9q34

Ellie Rose est née le 28 mars 2012. Elle est née après terme,. Elle était toute molle, dormait tout le temps et mangeait peu. Elle… Continue reading Ellie Rose, syndrome de kleefstra, microdélétion 9q34

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Living rare

Hi everyone!My name is tammy I’m in my early 30s and have a rare condition called eosinophilic gastroenteritis. Whilst people may age and back in… Continue reading Living rare

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My eleven years with NETS.

My time associated to NETS The below story is my eleven years in full. This should hopefully explain the highs and lows during my time… Continue reading My eleven years with NETS.

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