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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Muscle weakness develops slowly, then not so slowly. Climbing stairs becomes deliberate. A blouse won’t button. A rash appears across the knuckles that a dermatologist recognizes before a rheumatologist does.
The path to a myositis diagnosis often runs through years of being told the symptoms are stress, or aging, or nothing at all, until a biopsy or an antibody panel finally puts a name to what the patient already knew. What arrives with the diagnosis isn’t just a name for the disease, but confirmation of what the patient had trusted in themselves all along. This issue of ENCORES Magazine contains voices from the myositis community, who, alongside The Myositis Association, are working to close the distance between knowing and being believed.
