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Awareness

A total of 178 posts are filed under Awareness
The Variability of Marfan Syndrome: Spreading Awareness and Connecting the Patient Community
Siblings will always argue over who is taller. But what happens when your height is one of the symptoms of a life-threatening rare disease?… Continue Reading
Canadian Student Advocates for Rare Disease Patients with Inadequate Care
Did you know that roughly 8 million Canadians don’t have access to the proper medications that they require? This isn’t common knowledge… Continue Reading
Deadline Approaches for NTSAD Proposals on Tay-Sachs, GM-1, Sandhoff and Canavan Projects
NTSAD is soliciting proposals for innovative research projects that involve basic research, translational studies or clinical studies in the… Continue Reading
Ambry Genetics CEO and Director of Medical Affairs to Appear on the Lifetime series ‘Access Health’
Ambry Genetics’ Chief Executive Officer, Aaron Elliott, Ph.D., and Ambry Director of Medical Affairs and Breast Cancer Surgeon Robina… Continue Reading
Denied: A Rare Healthcare Insurance Battle
Nikki Batsford, who is 33 and in grave condition from hydrocephalus, had been fighting for five months to get insurance coverage for… Continue Reading
Today is FH Awareness Day: Celebrate On Twitter!
FH Awareness Day (est. 2012) is a campaign initiated by the FH Foundation to raise awareness of FH in the general public. This annual event… Continue Reading
RARE Revolution Online Magazines Premieres Inaugural Issue
As a community, we are only as strong as our most prominent voices—and now those voices have another forum to be heard! The release of… Continue Reading
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