Rare Disease

Rare Disease

Welcome to our world

Project Alive has now released 4 episodes of a mini-documentary series featuring Hunter Syndrome families like ours....

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Rare Disease

What Charlie Gard’s battle says to rare disease parents

The battle for the life of Charlie Gard ...

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Rare Disease

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. and Stand by Me....

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52 LettersRare Disease

Letter No. 14: Dear Mothers

Dear young, innocent, typical Mothers, There was a day when I was just like you....

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Rare Disease

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...

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ParentingRare Disease

Therapy Thursday: 50% off Calmer – a book to help with your child’s medical trauma

If your child has a chronic medical condition, then you’ve probably encountered challenges with medical trauma. Or maybe someone else...

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Rare DiseaseWriting

World Rare Disease Day: #RareWriter Blog Linkup

World Rare Disease Day 2016 is the platform for our first #RareWriter Blog Link-up! During Rare Disease week, link up your posts about...

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Rare Disease

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 want to ban it. I drive...

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Rare Disease

I have a confession

I have a confession. I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in...

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FaithRare Disease

Why? Why my child?

Why? That is a word that is heard often in the world of rare disease. It’s a word that is often heard in life. Why did this happen to...

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