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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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Myhre Syndrome

Alec was diagnosed on February 3, 2017 with Myhre Syndrome after being called a medical mystery by a leading hospital for children. He made the… Continue reading Myhre Syndrome

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How I’m Using my Talents to Raise Awareness

Many people perceive one’s senior year of high school to be a time in which teenagers are creating memories that will last a lifetime with… Continue reading How I’m Using my Talents to Raise Awareness

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Het leven met CVID

Hoi ik ben Monika en ben 43 jaar en alleenstaande moeder met 2 kinderen. Van af kleins af aan ben ik al vaker ziek dan… Continue reading Het leven met CVID

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A little girl, Dung, 7, as fighted with Crouzon Sydrome since new br

In Viet Nam, we totally don’t know this rare disease. There is something wrong with our daughter. Just only later on we know CROUZON SYNDROME.… Continue reading A little girl, Dung, 7, as fighted with Crouzon Sydrome since new br

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