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SeAndrea’s Myasthenia Gravis Story

On June 3, 2003, the neurologist said, “You have Myasthenia Gravis”. I was 18 years old and had just finished my freshman year at Purdue… Continue reading SeAndrea’s Myasthenia Gravis Story

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Pituitary Cancer, Addison’s Disease, and everything in between

To begin, I am truly honored to be considered a “Hero” of Rare Disease and share my story with the world. While the diseases and… Continue reading Pituitary Cancer, Addison’s Disease, and everything in between

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Young adult interview

What is your diagnosis? When were you diagnosed and has your diagnosis changed since the initial diagnosis? I was diagnosed on November 15, 2019 with… Continue reading Young adult interview

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Living with Angelman Syndrome-UPD

Conner is 7, he went undiagnosed until he was 5 years old, when the pandemic hit it took us 4 months to get our genetic… Continue reading Living with Angelman Syndrome-UPD

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A Life Without Pain

Our daughter, Bianca was diagnosed with HSAN IV (hereditary sensory autonomic neuropathy) also known as CIPA (congenital insensitivity to pain with anhidrosis) at age 8… Continue reading A Life Without Pain

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New life

From my birth till my first birthday, i was given a number of different diagnosis but none was right . Was given steroids for a… Continue reading New life

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Algo diferente

Tengo 20 años y soy de perú, nací con el síndrome klippel trenaunay, tengo manchas vasculares por casi todo mi cuerpo y sufrí mucho en… Continue reading Algo diferente

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Rare Diseases Day. Today and Every day!. The voice of young people.

Día Mundial de las ER. Hoy y todos los días. Desde España “La voz de los jóvenes. Somos muchos, somos fuertes y estamos orgullosos ”.… Continue reading Rare Diseases Day. Today and Every day!. The voice of young people.

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Fuerte y valiente

Tengo un bebé de 1 año 10 meses , , era una recién nacido cuando tuvo complicaciones, y desde ese momento inició un largo trayecto… Continue reading Fuerte y valiente

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