Emotional Journey Map
#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
🌍 The Raregivers Emotional Journey Map 🌍 When life gets medical, people get emotional. But it’s not just the patients who ride this emotional rollercoaster. It's the caregivers—often the mother (82% of the time)—the parents, grand
Join us this September 16-18 for the The Raregivers annual “Microsoft Hack for Good” Global Hackathon is scheduled for September 16-18, 2024. This event focuses on developing “ANGEL,” an AI Virtual Social Worker designed to su
🌿 A Weekend of Wellness & Empowerment 🌿 This past weekend, we had the incredible opportunity to host the Raregivers Women Wellness Retreat, and it was nothing short of transformative! ✨ From the beautiful connections formed to the moments of