“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
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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…
What is parahemophilia? It is commonly known as Factor V deficiency (FDV) and is a clotting (or coagulation) disorder where a specific protein is missing… Continue reading Making our RARE voices heard
This is Millie, this is our story. This little girl is 3 and has been very poorly since she was born. She has just been… Continue reading CSID (Congenital Sucrase – Isomaltase Deficiency)… the battle to diagnose a rare disease.
Rare Disease Day 2019 puts rare disease patient stories in the spotlight. This year’s campaign brings together three testimonial videos that tell the stories of… Continue reading Watch new patient videos for Rare Disease Day 2019