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A total of 108 posts are filed under Living
Respite Notebook Intended to Help Caregivers Take a Break
Daniel S. Levine Parents of children with a serious, chronic illness often fail to make the time to give themselves a break, spend time with… Continue Reading
Department of Education Rescinds Policy Docs on Students with Disabilities
Daniel S. Levine The U.S. Department of Education announced in a newsletter that it had rescinded a total of 72 policy documents relating to… Continue Reading
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

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