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lsla journey

As rare disease day approaches I can’t help but share a few thoughts and feelings behind all that comes with being a mother of a… Continue reading lsla journey

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4 foot super hero

Meet Finnley. At 5 years old he was diagnosed with two gene mutations c.524C>A, p. Pro175His, and FOXN1 with no name to the illness that… Continue reading 4 foot super hero

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Un Raro Camino de Amor

Cuando escuché por primera vez la palabra Krabbe, no sabía ni siquiera cómo escribirlo, pero he luchado con ella desde antes de conocerla mi pequeña… Continue reading Un Raro Camino de Amor

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The Power of Love’s Colors

Rare diseases hold the meaning of “The Power of Love’s Colors” for us. That’s why every color helps us grow stronger each day. Bahadır Yusuf… Continue reading The Power of Love’s Colors

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Finding The Power In You

In 2020 my medical journey began. A routine dental exam showed a concerning x-ray. They said it’s most likely cancer. I was misdiagnosed with Follicular… Continue reading Finding The Power In You

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It’s NOT MS!

My name is Marissa. I live in Toronto, Canada and I was recently diagnosed with NMOSD in September 2024.I woke up one morning and my… Continue reading It’s NOT MS!

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Mito Kämpferin

Mein Name ist Julia, ich bin 36 Jahre alt und habe Mitochondriopathie, eine seltene neuromuskuläre Erkrankung. Diese Erkrankung resultiert aus einem Gendefekt in den Mitochondrien,… Continue reading Mito Kämpferin

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The story of Selim

Selim was diagnosed with MPS II (Hunter syndrome) at the age of 7, although he had been experiencing different health problems since birth. Since an… Continue reading The story of Selim

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My frayed nerves.

 I live with small fiber polyneuropathy since early childhood which is caused by CMT2DD a rare genetic disorder with only 7 reported cases of this… Continue reading My frayed nerves.

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