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Living

A total of 106 posts are filed under Living
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
Rare Patient Starts Card Project for Hospitalized Kids
SOURCE Jen Rubino knows how it feels to be sick and in the hospital at a young age. The 22-year-old was diagnosed with a rare childhood bone… Continue Reading
Rare Disease Patient and Lawyer: “I Want to Walk Again”
By Paula J. Owen (Source) It is a rare, inherited, progressive disease affecting one in 50,000 that results in loss of ambulation six to… Continue Reading
Young Patient Collects Can Tabs to Raise Funds for Ronald McDonald House
(SOURCE) A Bristol teen who delivered a trailer full of aluminum can tabs to the Ronald McDonald House in 2014 is now attempting to collect… Continue Reading
Parent Advocates: What’s Your Rare Secret?
The Mighty recently released a powerful video talking about what rare parents want to say, but often keep secret. The inspiring video… Continue Reading
SCOPE on the Story of Carrie Ostrea: How a Mom Became a Rare Disease Advocate
The team here at Global Genes has had the opportunity to work with Carrie Ostrea for many years. Her service for our organization and in the… Continue Reading
Educated Caregivers: A Game Changer in Rare Disease
By Anjli Venkateswaran (SOURCE)   Scientists need to see who they are fighting for. Families walking the journey with critically ill… Continue Reading
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