The road to patient advocacy can be a long haul especially for those living with a rare disease. The waiting time, the unknown and the lack of education can leave patients and their caregivers grasping for even the littlest of information and support from medical communicators, physicians, and the like. Colleen Plunkett’s son K.E. Plunkett has gone through a tremendous…
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One Patient’s Vision Towards A More Inclusive Environment For Rare Diseases
Madaline Lesieur was diagnosed in 2001 with Hypereosinophilic Syndrome (HES), which is defined by The American Partnership for Eosinophilic Disorders (APFED) as: … A group of rare disorders in which high numbers of eosinophils are found in the blood and tissue, for prolonged period of time (6 months or more) for which a cause cannot be found. While most people…