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The Power of the Rare Disease Community When You're 'In the Thick of It'

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themighty.com
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Rare Disease Day feels different this year. We’re in the thick of it. In past years, we supported the day in solidarity with other rare families and in celebration of my son Z’s good health.

Managing his condition had only required check-ups with specialists while waiting for him to be old enough to tackle eye and head surgeries.

We felt connected to the rare disease community, but not exactly part of it. But now we’re in it, the dense jungle of fighting for a medically complex kid.

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