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MI hijo y la enfermedad de kawasaki

La historia de Ismael y la enfermedad de KAWASAKI Se desconoce la causa de la enfermedad o síndrome de kawasaki, pero presenta síntomas comunes a… Continue reading MI hijo y la enfermedad de kawasaki

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My Voice for RARE

I’m a mother to two lovely girls with rare diseases. One has Hemihyperplasia and Hydrocephalus, while the other has Ring 18 Chromosome. I raise my… Continue reading My Voice for RARE

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Sibling’s with brain bleeds

Our son Colton was diagnosed with Cerebral Cavernous malformation at 2 and a half years in November 2014. A week prior the seizures began which… Continue reading Sibling’s with brain bleeds

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Living with UCMD

When I was born there was something different about me. I was born with floppy hands and feet. My mom knew there was something wrong… Continue reading Living with UCMD

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just found out

A few months ago we found out that my 11 year old has 16p11.2 microdeletion syndrome. Kegan has been developmentlly delayed, has dyslexia, and not… Continue reading just found out

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A fight for a diagnosis of Blount’s Disease

My daughter Elsie has recently been diagnosed with Blount’s Disease after fighting for over a year for a diagnosis! Elsie started walking at the early… Continue reading A fight for a diagnosis of Blount’s Disease

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My son Ross

Ross is 18. He has Langerhans Cell Histiocytosis, Hypopituitarism, Cerabella Ataxia and Epilepsy.Ross was 2 when he diagnosed with Langerhans Cell Histiocytosis, treated with chemotherapy,… Continue reading My son Ross

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Braelyn’s Cutaneous Systemic Mastocytosis

Before yesterday we were a family of four with one of our little girls who had what we thought was an allergic response to milk… Continue reading Braelyn’s Cutaneous Systemic Mastocytosis

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