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Awareness

A total of 202 posts are filed under Awareness
The Balancing Act: Orphan Drugs Conquering Rare Disease One-By-One at Conference
The Orphan Drug Conference USA 2017 welcomed thousands of attendees as science, industry, big pharma, and patient advocacy groups met in… Continue Reading
Project Alive: Documentary Series and Social Media Challenges Seek to Raise MPS Awareness
May 15 each year is known to some parents as International MPS Awareness Day. But for most people, they’ve never heard of MPS. Two recent… Continue Reading
The Balancing Act Covers the Orphan Drug Conference USA 2017
The Orphan Drug Conference USA 2017 welcomed thousands of attendees as science, industry, big pharma, and patient advocacy groups met in… Continue Reading
Advice From RARE Moms- A Supportive Response to SickKids Foundation’s “Strong Mom” Video
A heart-wrenching video created by the SickKids Foundation took over social media earlier this month. The short commercial showed a series… Continue Reading
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What You Don’t Know About Huntington’s Disease
I thought I knew all there was to know about Huntington’s disease. I’d seen it on an episode of House MD. Read stories about adults… Continue Reading
Family Travels to Machu Picchu To Take On Denim Dash Challenge
Andrés Treviño and his family took Dashing to new heights in Peru at Machu Picchu for Global Genes’ Virtual Denim Dash 5k. The 5k began… Continue Reading
Undiagnosed Day is April 29th! Join Us to Honor the Undiagnosed Rare Disease Community
“An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease Network UDN What… Continue Reading
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