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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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Celebrating the uniqueness of being rare

Our journey began when we discovered that Madalynn had a genetic disorder at just under 2 years old, after a terrifying ICU stay due to… Continue reading Celebrating the uniqueness of being rare

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Tulang ku memang rapuh tapi cita-cita ku tidak akan rapuh

Hy nama ku Bintang El-Shanum saya berasal dari Indonesia. aku mengalami kelainan tulang sejak dalam kandungan terlihat dari mesin USG tulang panjang ku sangat pendek… Continue reading Tulang ku memang rapuh tapi cita-cita ku tidak akan rapuh

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My EM Story

I was diagnosed with Primary Erythromelalgia (EM), a rare and painful disease, in the spring of 2012. Erythromelalgia is a rare neurovascular condition that most… Continue reading My EM Story

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