During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
An incurable disease that causes painful muscle spasms just got $45,000 closer to a cure. Dystonia is an uncomfortable condition that causes muscles to contract involuntarily, forcing the body to…
In August 2015, pharmaceutical giant, Shire, made public their new deal with Sanquin, the company that manufactures CINRYZE®. CINRYZE is a drug that is indicated for the rare disease disorder,…
Domingo didn’t want to go to yet another doctor. He’d had it. They never believed him when he described his weird and extremely painful swelling episodes. When he was a…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones: Opción 1: Aceptalo, vive la vida ociosamente, y espera al día que te encuentres con tu creador O Opción 2:…
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