I cannot tell you how many children and adults I know who live their lives with a rare disease diagnosis. It is as if people with these unusual maladies are cosmically drawn into my life and I into theirs. Despite how their medical challenges have contorted their lives and their loved ones’ existences, they power on… because there is no other choice.


For the Rare Disease warriors — both directly afflicted and indirectly affected by relation — this day we honor you. Your strong days embolden us. Your weak days humble us. Your determination inspires us. But, mostly, we’re just grateful to have you in our lives, strengths, flaws, and all.

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