Subscribe to
this category
r

Awareness

A total of 172 posts are filed under Awareness
Screen Shot 2016-09-12 at 1.33.58 PM
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
BA050516-BA2942-520x293
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
phrf-logo
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
Awaraness-Avatar
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
collen-mccarthy-otoole
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
unnamed-55
Launch of FindaCure’s Peer Mentoring 2016
Find a Cure is happy to announce the launch of their Rare Disease Peer Mentoring Programme! Following their successful pilot, they are… Continue Reading
Youtube-thumbnail
Segment on Huntington’s Disease to Appear on Access Health
</iframe   Huntington’s Disease is an inherited and incurable brain disorder effecting motor, cognitive and behavioral functions. We can… Continue Reading