rare disease

What Charlie Gard’s battle says to rare disease parents

The battle for the life of Charlie Gard  (more…)

7 years ago

When You Outlive Your Generation

I grew up in the 70's and 80's, the era of neon and Michael Jackson, pop rocks and Coke, E.T.…

7 years ago

Letter No. 12: Dear Dragon Mom

Dear Jamie, “Stay with us.” (more…)

8 years ago

Letter No. 8: Dear Rare Disease

Dear Rare Disease Family, I finally built my dream home. (more…)

8 years ago

A Rare Disease Parent’s Top 10 Christmas Wish List

Christmas looks different for parents of kids with rare diseases. And instead of celebration, it's often a difficult time. Visiting…

8 years ago

Why I Freak Out When My Son Says He’s Going to College

I don't know what dang blasted cartoon is telling my son about things like high school and college, but I…

9 years ago

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