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I’ve been told I was rare

            Having in mind that the tests on Facebook do not always put me in the “special” category based on my eye color or on… Continue reading I’ve been told I was rare

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Brandon’s Wish

It started with nosebleeds when Brandon was three years old, too heavy and too often to be normal for a young child. Then rashes started coming up, and other symptoms started… Continue reading Brandon’s Wish

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Unusual illnesses

I am now 72 at the age of 4 I had menegitis which has left me with many problems mainly memory my school days where… Continue reading Unusual illnesses

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Challenge with Crouzon Syndrome

Dung was born in 2010 with Crouzon syndrome since new born. We were very surprised when hearing this such syndrome that was the first time… Continue reading Challenge with Crouzon Syndrome

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Caleb Champagne

  Caleb Champagne  On the morning of October 27, 2016 we were scheduled to welcome our second child into the world. What was a routine… Continue reading Caleb Champagne

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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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