Undiagnosed diseases: definition, statistics, problems and solutions A new decade begins. In Quebec, we are hopeful that by 2020, action will finally be taken to improve the health and living conditions of people with rare and orphan diseases, as well as their caregivers and families. It will have taken a decade of awareness-raising, education and […]
The most orphan of rare diseases: diseases without a name Read More »
Antony suffers from Morquio disease. Learn from him what this disease means to him. Listen to the speech he wrote and read at a fundraising dinner for “Rêve d’enfant” on the North Shore. Watch the video on the Morquio Community Facebook page (Quebec) Morquio disease or syndrome Mucopolysaccharidosis type IV (two forms: A and
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 walk well! Other poems/songs by Suzie Audet >>> Autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) ARSACS is a progressive, hereditary neurological disease. It is most common in the Saguenay-Lac-St-Jean (SLSJ)
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 of the various legendary characters our storytellers have been referring to for centuries: fairies, elves, goblins, giants, dwarves, vampires, werewolves and other curious creatures. Throughout the world, descriptions of similar
All I want is to die without pain Every day I breathe With every breath of pain When all I want right now Is to die without pain With each day the grave draws nearer No matter where I turn, Always alone I spoke, screamed and cried my desire And yet no one hears
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 we are surrounded by supportive family and friends. It’s only when we see the forest and not the trees that we realize we’re not alone.” Pierre is passionate about photography.
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 form of Myasthenia Gravis in August 2001. No longer able to hold down a full-time outside job, she now shares her spare time and energy by volunteering her computer skills