Rare Disease Day

Imagine that all of a sudden, your world stops.

Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while. You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.

This isn’t COVID-19. This is everyday life living with a rare disease. But having lived in a pandemic, we can all now empathize…

Collaborative approach used for rare diseases can help us defeat COVID-19

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