If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…
With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
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Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
