Rare Disease Day is today, 29 February as it is a leap year. The rarest day of the year dedicated to raising awareness for people living with a rare… Continue reading Today is Rare Disease Day 2020
Results for "light up for rare"
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My name is Michael and I am a multi-zebra. This is someone who suffers from mutliple rare medical conditions. Specifically, I have four (4) rare conditions with… Continue reading Surviving with multiple rare conditions
Hi my fellow Zebras/Unicorns! A few years ago I was diagnosed with Guillian Barré Syndrome, and within a few weeks of being in the hospital… Continue reading RareXEight
“95”, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare and an undiagnosed rare disease. It was founded… Continue reading 95, Rare Alliance Greece
Write articles about living with a rare disease for our website, create patient spotlights, and share art. We also hope to get members of our… Continue reading Sighted Non-24 Awareness Group
My name is sophie and 3 years ago my life was changed upside down. I have always been this bubbly, happy child who sees the… Continue reading Hiding a rare and complex disease
AN ENCOUNTER & COPING UP WITH A RARE CONDITION by Rachit This is written at a time when it’s as serious, an issue as… Continue reading AN ENCOUNTER & COPING UP WITH A RARE CONDITION
AN ENCOUNTER & COPING UP WITH A RARE CONDITION by Rachit This is written at a time when it’s as serious, an issue as… Continue reading AN ENCOUNTER & COPING UP WITH A RARE CONDITION
(Please note that my experiences are my own and are not representative of all GNEM patients). GNE myopathy (GNEM) is an ultra-rare neuromuscular disease. GNEM… Continue reading My rare disease may take away my strength but it can’t take away my spirit…