Tags » Rare Disease


Best Products from Chungbuk, Korea

ARIBIO Co., Ltd. was established in 2010 to develop new medicines. Our goal is to develop innovative new medicine to give hope to patients and improve quality of life. 244 more words

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My week

All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome… 749 more words

Rare Disease

The Last Stage

You know, I never feared for my mother’s life growing up. Huntington’s Disease is such a tease, such a game. The person starts out “normal,” and the progressively declines. 962 more words


The Book is Here.

Holy cow, the book is finally here. What a happy week! Not the book that I’ve quoted from before, or talked about, but this book is a little different! 151 more words

Pulmonary Hypertension

It's okay to need help

Hello everyone, yes I know, it has been a really long time since my last post. I’m not even sure where to start…. Maybe lets get the negative part of my story over with first and end strong on a happy note. 844 more words

Happy Anniversary!

4 years ago today I heard the words that forever changed the direction of my life:  “There’s something there.”

I wonder if I’ll always be moved on this date, or once I hit the 5-year mark things will be easier? 100 more words

Rare Disease


“Where dark woods hide secrets,
And mountains are fierce and bold,
Deep waters hold reflections,
Of times lost long ago.

I will hear their every story,

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