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My life with SCA1 – past and present

Hi all, I got recently diagnosed with SCA1 51 CAG bases via a gene test here in Finland. I am able to still do the… Continue reading My life with SCA1 – past and present

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Shining with HSP

I was the first in the family diagnosed correctly with HSP at age of 12 but showed signs at 5 my maternal grandmother was told… Continue reading Shining with HSP

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Policondritis Recidivante/Relapsing Polychondritis

La Policondritis Recidivante es una rara enfermedad autoinmune que afecta no solamente a las estructuras de los cartílagos, si no también a cualquier sistema del… Continue reading Policondritis Recidivante/Relapsing Polychondritis

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Policondritis Recidivante/Relapsing Polychondritis

La Policondritis Recidivante es una rara enfermedad autoinmune que afecta no solamente a las estructuras de los cartílagos, si no también a cualquier sistema del… Continue reading Policondritis Recidivante/Relapsing Polychondritis

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I’ve been told I was rare

            Having in mind that the tests on Facebook do not always put me in the “special” category based on my eye color or on… Continue reading I’ve been told I was rare

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Brandon’s Wish

It started with nosebleeds when Brandon was three years old, too heavy and too often to be normal for a young child. Then rashes started coming up, and other symptoms started… Continue reading Brandon’s Wish

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Unusual illnesses

I am now 72 at the age of 4 I had menegitis which has left me with many problems mainly memory my school days where… Continue reading Unusual illnesses

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Challenge with Crouzon Syndrome

Dung was born in 2010 with Crouzon syndrome since new born. We were very surprised when hearing this such syndrome that was the first time… Continue reading Challenge with Crouzon Syndrome

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Caleb Champagne

  Caleb Champagne  On the morning of October 27, 2016 we were scheduled to welcome our second child into the world. What was a routine… Continue reading Caleb Champagne

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