Latest Episode
Rare Awareness Radio documents lived experience across rare disease communities through long-form conversations with patients, caregivers, clinicians, and researchers. These conversations form a narrative archive that informs the qualitative analysis conducted by Community Resonance Foundation.
An eight‑year search for answers shaped Melanie Colter’s journey into the HCU community, as her son Mason lived with an undiagnosed metabolic disorder that remained invisible until a routine eye appointment changed everything. In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with Melanie about the emotional and medical realities of delayed diagnosis, the daily work of managing a condition where protein intake must be carefully controlled, and how her family’s experience grew into a commitment to support others and strengthen awareness for HCU across Canada.
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Latest Issue
ENCORES transforms lived experience documented through Rare Awareness Radio into structured narrative insight. Each issue synthesizes perspectives from patients, caregivers, clinicians, and researchers to illuminate patterns across the rare disease ecosystem and inform broader healthcare conversations.
Every child’s story begins with a blueprint: a genome of roughly 20,000 genes working in concert. For most families, that blueprint unfolds quietly, its small variations carrying no visible consequence. Sometimes, though, a change in a single gene can alter development, disrupt body systems, and send families on a long search for answers. For those connected through CRELD1 Warriors, a UK‑based charity and global community, that search has led to one gene: CRELD1. This issue of ENCORES explores that gene, the conditions it causes, and the families, clinicians, and researchers working to bring its biology into clearer view.
