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Thomas is a PBD warrior!

Thomas is a little warrior who is 2 years old  living with Peroxisome Biogenesis Disorder (PBD), from Saint-Quentin, NB, Canada. Thomas is 1 of 175… Continue reading Thomas is a PBD warrior!

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RARE AND PROUD

Is estimated that 3 out of 100,000 people get affected by “Granulomatosis with polyangiitis”  I got so lucky that i´m 1 of those 3. My name… Continue reading RARE AND PROUD

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Still Smiling

Regan developed Ligneous Conjunctivis at the age of 4.  After 10 months of searching for answers Regan was diagnosed with Congenital Plasminogen Deficiency, Type 1… Continue reading Still Smiling

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Fighting Familial adenomatous polyposis

 I just completed my first year of college and was home on summer break. I alerted my Mom that I had rectal bleeding and it had… Continue reading Fighting Familial adenomatous polyposis

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Misophonia

My daughter is 14. We’ve always known her to be very intelligent, sensitive and mature in many ways. What we didn’t know was the disorder waiting… Continue reading Misophonia

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Mio Fratello ( my brother) by Giulio Base

When Edoardo was one year old we saw that something was wrong. He could not walk and when he started walking at 18 months, he… Continue reading Mio Fratello ( my brother) by Giulio Base

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But he doesn’t look disabled.

Nicholas was born with Phelan-McDermid Syndrome, but we didn’t realise he had that condition until he was diagnosed at 3 years of age. After failing… Continue reading But he doesn’t look disabled.

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My Daughter, Lexi, Has Bronchiolitis Obliterans

My daughter is 6, and was diagnosed with bronchiolitis obliterans in December 2017. She has had pneumonia since January 2017, and cannot beat the infection… Continue reading My Daughter, Lexi, Has Bronchiolitis Obliterans

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My Journey with Addison’s

In the fall of 2007, shortly after I began third grade, I grew pretty sick. I was much more tired than usual, and even ended… Continue reading My Journey with Addison’s

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