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Awareness

A total of 174 posts are filed under Awareness
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
Full Behind The Mystery Segment: The Trouble with Diagnosing a Rare Disease
Lifetime’s The Balancing Act premiered it’s newest segment of “Behind the Mystery” earlier this month with an educational story on… Continue Reading
Pitt Hopkins Awareness Day Coming September 18th
Organization: Pitt Hopkins Research Foundation Submitted by: Jessica Fletcher Sunday, September 18th marks our 4th annual International Pitt… Continue Reading
2nd Annual Erdheim-Chester Disease Awareness Week
Organization: ECD Global Alliance Submitted by: Elizabeth Anderson September 12-17, 2016 will mark the Erdheim-Chester Disease Global… Continue Reading
SMA Community Celebrates SMA Awareness Month in August
Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord,… Continue Reading
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