Who Cares for the Raregiver?

This Rare Disease Month, the team is shifting its focus to the caregivers.

Caregiving is often seen as the ultimate display of love. It's a role that needs more recognition, but when we start thinking about caregivers as heroes, we risk no longer seeing them as people who could need support from others. In this episode, Sonika and Gabe are joined by Raregivers' founder Cristol Barrett O'Loughlin, Havas Health's Global Rare Disease Lead Afshan Rizvi Hussain, and Social Strategist Binaka Norris to discuss the emotional pain caregivers endure and the global PSA they're launching for Rare Disease Day to bring that pain to light. Their illuminating conversation examines how idealized narratives of strength can unintentionally deepen stigma and suppress vulnerability. Through the lens of caregivers of people with rare diseases, they explore the emotional complexity of long-term care and the psychology of self-sacrifice.

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