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A Diagnosis that Changed Everything

I still remember the moment the doctor told me I had IgA Nephropathy. The words felt heavy, foreign—like a storm I hadn’t seen coming. I… Continue reading A Diagnosis that Changed Everything

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Ana is rare

Ana is considered a medical complex child, with multiple diagnosis, and among these, she has two that fall into rare category: Neurofibromatosis type 1 (NF1)… Continue reading Ana is rare

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Mollie’s ARPKD Journey💜

This is Mollie 💜 She was born with ARPKD (Autosomal recessivepolycystic kidney disease) This was not discovered until mollie was 3 months old. Mollie is… Continue reading Mollie’s ARPKD Journey💜

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Sou forte

Tenho 17 anos , foi diagnosticado minha síndrome aos meus 3 anos de idade .medicos disseram aos 10 anos eu já não estaria neste mundo… Continue reading Sou forte

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Only a chapter in my life. Not the whole story.

I was diagnosed in 2016 with Superior Mesenteric Artery Syndrome. I’ve gotten down to as low as 91 lbs. I’m currently on feeding tube number… Continue reading Only a chapter in my life. Not the whole story.

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Growing up with LGMD

We are pleased to present to you the documentary, “Growing up with LGMD”, featuring Sophie, Brooklyn, and Sammy. These young ladies all live with Limb-Girdle… Continue reading Growing up with LGMD

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Doença hageman fator coagulação sangue

VITÓRIA TEM 7 ANOS ATUALMENTE DES PEQUENA QUE COMEÇOU SURGIR MANCHAS ROXAS PELO CORPO ASSIM FORAM MESES ATRÁS RESULTADO NADA FORAM MESES FAZENDO EXAMES NADA… Continue reading Doença hageman fator coagulação sangue

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The fight against PSP Progressive Supranuclear Palsy

I’d like to tell you my story. Progressive Supranuclear Palsy (PSP) is a very rare terminal brain disease that slowly kills off the stem cells… Continue reading The fight against PSP Progressive Supranuclear Palsy

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What a shock

In 2022 I was eventually diagnosed with Alexanders disease. I was 70 years old and didn’t expect that! People who see me now see an… Continue reading What a shock

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