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Awareness

A total of 204 posts are filed under Awareness
Understanding What Rare Disease Caregivers Face
Caregivers of patients with rare diseases are providers, protectors, and advocates. They have forced themselves to learn the language of… Continue Reading
Run to The Light: A Sibling’s Life-Long Mission to Defeat Batten Disease
Laura was already sixteen years old when her younger sister, Taylor, was born. She watched as her sister bloomed from a happy, healthy baby… Continue Reading
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