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My Rare Tumour

Waking up Sept, 2018 in excruciating pain was the start of a long unexpected journey. After three ambulances to A&E, refusal to be given a… Continue reading My Rare Tumour

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Enzyme deficiencies

Thankfully, when they first visited Great Ormond St Hospital for Children the unique babies were put into the specific care of two exceptional people, one… Continue reading Enzyme deficiencies

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Dreaming of finding a cure for my illness

I am Eric, I am 15 years old. I am one of the 4 children affected in Spain and less than 65 in the world… Continue reading Dreaming of finding a cure for my illness

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Rare Condition

My name is LaQuantas and I’m 43 years old. I never imagined not being able to live a happy and fulfilled life, especially at this… Continue reading Rare Condition

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Living with a rare Muscle Disease

In 2015, I was diagnosed with Inclusion Body Myositis (IBM), a rare degenerative muscle disease, with no known cause, treatment or cure. I was 58… Continue reading Living with a rare Muscle Disease

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Más alla de un Diagnostico

Mi nombre es Bersy. El 10 de junio de 2022, fui diagnosticada con una condición rara llamada Mitochondrial Encephalomyopathy, Lactic Acidosis and Stroke-Like Episodes (MELAS)… Continue reading Más alla de un Diagnostico

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Julian’s Story

Meet Julian, an 8 YO boy who suffers from FX. He was diagnosed with FX at 13 months old. Since birth we noticed he was… Continue reading Julian’s Story

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Unyielding Spirit: Sylvia’s Double Battle with Cancer and SSN

Just as we thought the storm had passed, a new tempest emerged, more unyielding and cruel. Sylvia, a beacon of courage and hope, had just… Continue reading Unyielding Spirit: Sylvia’s Double Battle with Cancer and SSN

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