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#3 Shifting Responsibilities: As roles change, so does identity—bringing role strain and the need to learn about the disease. Suddenly, you become the expert, the advocate, and often the nurse, all while grappling with resistance to this new
#2 Adjusting to Diagnosis: Managing symptoms, learning about genetics, and navigating the lack of treatment options. Complex care coordination becomes the new normal, bringing with it feelings of overwhelm and fatigue. Yet, many rise to the challeng
#1 Noticing Changes: It starts with a desire for answers, a diagnosis that brings clarity. But then comes the engagement with healthcare systems and bureaucracy, often met with a lack of disease-specific information. The journey is often filled wi
Emotional Health: A Hidden Reality In rare, chronic, and complex disease communities, the emotional well-being of patients, caregivers, and professionals often goes undocumented and unsupported. Since 2019, Raregivers™ has been at the forefro