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parent advocate

February 8, 2018 by carrie

Article: Steps to Take After Receiving a Rare Diagnosis

As a rare parent advocate, one of the questions I get asked most by newly diagnosed families is "What do I do next? How will I manage this?" My good friend and colleague, Anne Bruns, and I co-authored this article for Exceptional Parents Magazine's annual "Navigating Special Needs Resources" … [Read more...] about Article: Steps to Take After Receiving a Rare Diagnosis

Filed Under: Advocacy Tagged With: Anne Bruns, caregiving, Exceptional Parent Magazine, newly diagnosed, parent advocate

October 18, 2017 by carrie

5 Steps to Becoming A Rare Disease Parent Advocate

When your lifestyle becomes overwhelming because you are caring for a medically complex child, the idea of becoming a rare disease advocate becomes daunting. "How do I add advocating for my child's rare disease community when I can barely keep my head above water?" is something I hear all the … [Read more...] about 5 Steps to Becoming A Rare Disease Parent Advocate

Filed Under: Advocacy Tagged With: advocacy, childhood rare disease, parent advocate

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