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Twenty-Two Years of Unyielding Courage

From the moment I was diagnosed at just six months old with Glazmann’s Thrombasthenia—a rare genetic disorder affecting blood clotting—I knew my journey would be… Continue reading Twenty-Two Years of Unyielding Courage

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Ju’s Morbus Gaucher

Julia wird im Alter von 6 Jahren mit Morbus Gaucher, einer seltenen Stoffwecheselerkrankung diagnostiziert. Wie kam es dazu?Im Alter von 2 1/2 Jahren begannen sich… Continue reading Ju’s Morbus Gaucher

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The mustard seed vs ALS.

My name is Greg “Coach” Neal. I’m a very active 63-year-old male that has been diagnosed with ALS. Writing a blog is nothing I wanted… Continue reading The mustard seed vs ALS.

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Complicated Rare Disease Warrior

My life has always proven to have some sort of health issue. As a child, no genetic tests were done. We knew I had lots… Continue reading Complicated Rare Disease Warrior

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Es Amaro, no es raro!

Amaro es un niño de 13 años diagnosticado de tetrasomia 9p hace 4 años. Desde que nació tuvo dificultades motrices y de aprendizaje, mucho dolor… Continue reading Es Amaro, no es raro!

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Alvaro’s Journey

My son Álvaro (27) was diagnosed with Gorham Stout disease, a complex lymphatic anomaly (CLA), months after the diagnose of a mediastinal germ tumor. Two… Continue reading Alvaro’s Journey

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Rare and mighty

I am a super happy, silly and loving 6 year old. I was diagnosed with RTS at 2 years old. It took two years which… Continue reading Rare and mighty

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Témoignage sur le syndrome ondines.

Bonjour je m apelle antonin.Je vie depuis ma naissance depuis mes 25 ans avec une maladie respiratoire rare le syndrome ondines.J oublie quand joublie de… Continue reading Témoignage sur le syndrome ondines.

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