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We may be rare in isolation, but not in collective experience.

My name is Sharifa, a mother to two rare diseases affected children, Nasreen and Ali. Nasreen is no more. She has joined the other side… Continue reading We may be rare in isolation, but not in collective experience.

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A Fragile life

Lachlan was born on 20th August 2017, at exactly 32 weeks gestation in Brisbane, Australia.  He faced the usual challenges with being born 8 weeks… Continue reading A Fragile life

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Como cheguei ao diagnóstico da Doença de POMPE

Sou portadora da Doença de POMPE tenho 47 anos, fazem 6 anos que faço reposição de enzimas com Miozyne. Levei 9 anos para ser diagnosticada… Continue reading Como cheguei ao diagnóstico da Doença de POMPE

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Our Gunnar, Our Superhero

Our son Gunnar, last of 6 born, was diagnosed with Imperforate Anus at birth. He had an ostomy placed at 2 days old, corrective surgery… Continue reading Our Gunnar, Our Superhero

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My life with cEDS

My EDS story: 5 years old,  excitedly cheering on my mom at her softball game , City Park ball fields, Fort Collins, Co. Mom hit… Continue reading My life with cEDS

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There’s no limits

I live with Agammaglobulinemia, and no, it is not the name of my pet but of my disease. My journey has had many rocks, limits, problems,… Continue reading There’s no limits

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Living Rare and Searching For Hope

I didn’t know I had a rare disease until I had lived with it for over 10 years! Misdiagnosis and horrible “treatments” had left me… Continue reading Living Rare and Searching For Hope

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Living life with meaning and purpose

When I was 19 years old, I woke up with a terrible pain radiating down my left leg, and later had a left foot drop.… Continue reading Living life with meaning and purpose

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Un peu moins d’air dans les poumons un peu plus d’amour dans le coeur

J’ai 37 ans et j’ai appris ma maladie il y a 6ans.Depuis j’ai subi de nombreuses opérations et la prochaine (j’espère pas trop vite) sera… Continue reading Un peu moins d’air dans les poumons un peu plus d’amour dans le coeur

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