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Awareness

A total of 199 posts are filed under Awareness
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
help4hd
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
Behind the Mystery ALS
New ALS Segment on Lifetime’s Behind the Mystery Airing 5/4/2017
Lifetime’s Behind the Mystery will be featuring a new segment on May 4th, 2017 about ALS.   ALS is a rare, debilitating neurodegenerative… Continue Reading
Boston_Marathon
Rare Disease Patient and Marathon Man, 67, Keeps Running
Bennett Beach, 67, is a man on the run. On April 17, the resident of Bethesda, Md., will participate in his 50th consecutive Boston… Continue Reading
Frank Rivera, Sarcoidosis Advocate, Shares Cautionary Tale on the Value of Awareness
It’s not an uncommon occurrence for a rare disease patient to be misdiagnosed. It happens every day. When it takes an average of 7 years… Continue Reading
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