The University of Notre Dame joined forces with Know The Glow at a recent rare disease conference to highlight their impactful awareness campaign for “the Glow”—an awareness message that has traveled to Israel and been translated into Hebrew, a language spoken by 9 million people worldwide.
The 2019 RARE Patient Advocacy Summit in San Diego, CA, on September 19 – 20, hosted by Global Genes, is the largest gathering of rare disease patients, caregivers, and rare disease stakeholders in the world.
Know The Glow is proud to add their message about “the Glow” to an event that provides an unparalleled opportunity to forge meaningful connections with other rare disease advocates and learn actionable strategies to accelerate treatment, cures, and diagnoses.
Our team included the University of Notre Dame’s Barbara Calhoun, a nurse practitioner, and neuroscience student advocates, Brian Hall and Bryan Min—as well as our very own Know The Glow co-founder, Megan Webber and KTG Board Member Cindy Mays.
Global Genes’ president and founder Nicole Boice reminds us that 350 people worldwide are affected by rare diseases—which often take an estimated eight years, ten specialists, and three missed diagnoses to finally be diagnosed correctly.
The eye diseases and tumors that Know The Glow fights to eliminate spread too quickly to allow for this kind of wasted time, reminding us of our awareness campaign’s importance.
We are grateful for the opportunity to provide tools and resources to families in order to quickly spot these vision-robbing diseases.
Nicole reminds us that a quick diagnosis means more than just treating the disease—quickly diagnosing the cause of painful symptoms also saves families from a serious psychological trauma and economic stress.Let’s keep working together. Let’s use the resources at hand (sharing social media posts, putting up posters in schools, sharing success stories to keep our spirits strong) in order to make the future brighter for our children—because no child should go blind when prevention through simple awareness is so close at hand.