Testimonials
Portraits
If we’d known before…
If we’d known before… Mr. Ralph Gaudet lost his wife, Mme Pauline Paradis-Gaudet, two years ...
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Carole
Suffering in solitude Stiff person syndrome Hello, I have Stiff Person Syndrome. Emotional stiffness, loss ...
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Chantale
A winner is a loser who bounces back. Chantale, waiting for Charcot-Marie-Toothpolyneuropathy
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Héloïse
Russell-Silver syndrome On my thirtieth birthday, I went for my 20-week ultrasound. In the ...
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Alec
Russell-Silver syndrome It’s my first pregnancy, everything’s going well, I’m not feeling unwell, I’m not ...
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Maëlle
Maëlle, a rare little girl I’m the mother of an 8-year-old girl, Maëlle, who is ...
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Mélissa and Olivier
Mélissa and Olivier, sister and brother, with Morquio disease It’s time we did something about ...
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Marie-Josée
A new syndrome… Multiple spondyloepiphyseal dysplasia. “Multiple” includes hearing, visual, physical (proportional dwarfism, scoliosis, dislocation ...
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Poems and prose
Suzie
To be able to walk well A tasteful sensation! Value and honor Yes, but no pain! It’s always a pleasure To be able to ...
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Mireille
Book: Legends or rare diseases? Author: Mireille Thibault Éditions Archimède, 2010 Book summary “At the root of many legends lies a certain reality. Just think ...
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Nathalie
All I want is to die without pain Every day I breathe With every breath of pain When all I want right now Is ...
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Photos and drawings
Pierre
Isolation Gaucher disease “My name is Pierre, and I’m an Ontarian with ties to Quebec. With a rare disease, we often feel isolated, even if ...
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Francine
Francine grows African violets Francine is passionate about plants and cats. Trained as an illustrator and computer graphics designer, she was diagnosed with a severe ...
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Interstitial cystitis: When the need to urinate becomes a pain
Several hundred thousand people are afflicted in Canada, and it is estimated that half of these people go from doctor to doctor seeking a diagnosis ...
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Video and audio
Antony
Antony suffers from Morquio disease. Learn from him what this disease means to him. Listen to the speech he wrote and read at a ...
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