Posts tagged with global-genes-project

The Systemic Impact of Rare Disease: Medical, Emotional, Financial, Social

Posted Tuesday April 09, 2013 by Melissa

Rare diseases may seem like solely a health care issue, but in...

Rare diseases may seem like solely a health care issue, but in fact, a newly released report finds that their impact is much more systemic, affecting the health care system...

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US rare disease infographic

Hope … and Chaos: Rare Disease Day

Posted Wednesday February 29, 2012 by Melissa

Today is a unique day. It is known to most as being...

Today is a unique day. It is known to most as being unique for being Leap Day. But for our family and those of many we know, it is unique...

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Rare Disease Leadership Summit

Posted Tuesday July 26, 2011 by Melissa

Recently, I was blessed enough to attend the 6th Annual Rare Disease...

Recently, I was blessed enough to attend the 6th Annual Rare Disease Leadership Summit in Washington, DC. If you’re interested, you can download the agenda to review. Also, yesterday the...

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White House