Latest Episode
Rare Awareness Radio amplifies community voices while building a public record of lived experience. These long-form conversations with patients, caregivers, clinicians, and researchers, keeps community perspectives visible to audiences whose decisions shape care, research, and policy.
Nicole Pallone and Tanya Chute Nagy reflect on the conversations and themes that emerged across the six-episode series, drawing on both their leadership at CanPKU+ and their lived experience within the PKU community. In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with them about what these conversations reveal about advocacy, equity, and the practical realities of living with rare metabolic disorders. Together, they consider how community leadership, collaboration, and patient insight can strengthen systems of care and what it takes to ensure families are not left to navigate the rare disease journey in isolation.
Latest Issue
ENCORES builds from Rare Awareness Radio conversations to tell a broader story of a rare disease community. Each issue preserves individual voice while drawing connections across experiences, needs, and priorities that may otherwise remain fragmented.
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Genetic medicine has become remarkably good at naming things. A child presents with seizures, developmental delay, abnormal eye movements. A blood draw follows. Weeks later, a variant in a gene called CACNA1A is identified, revealing a disorder whose biological basis is becoming clearer, more predictable, and still entirely without a targeted treatment. So the question that follows diagnosis in this condition is the same: if we know what the problem is, why can’t we fix it? This issue of ENCORES Magazine focuses on the CACNA1A Foundation, Inc., an advocacy organization founded by parents who refused to accept that nothing could be done for their children. Together, they are building the conditions under which a treatment becomes possible.
