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Rare Awareness Radio

Rare Awareness Radio

By: Rare Awareness Radio
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 Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.All rights reserved Economics
Episodes
  • EP 40 Maureen Smith

    EP 40 Maureen Smith
    Apr 19 2026
    How can rare disease research become more human, more effective, and more accountable to the people it’s meant to serve? In this powerful episode of Rare Awareness Radio, host Richard Juknavorian speaks with Maureen Smith, a lifelong rare disease advocate whose journey began as a child participant in clinical trials and evolved into decades of leadership in patient-partnered research. From her own lived experience with an ultra-rare condition to her national work advancing research collaboration, Maureen offers a compelling vision for the future of rare disease innovation. Together, Richard and Maureen explore why patients must be more than research subjects—they must be true partners in study design, governance, clinical trials, and outcome measurement. Maureen shares lessons from her work with CANPKU+, including the development of registries, core outcome sets, youth engagement initiatives, and strategies to reduce power imbalances between institutions and families. This conversation also tackles urgent questions about funding, tokenism, transparency, and how research priorities should be driven by real, unmet needs—not by academic curiosity alone. Maureen’s insights are practical, passionate, and deeply earned. If you care about patient-centered healthcare, rare disease advocacy, clinical research reform, or the power of lived experience, this is an episode you won’t want to miss. More on CANPKU+: https://canpku.org/ More on Rare Awareness Radio: https://rareawarenessradio.org/ #RareAwarenessRadio #RareDisease #PatientAdvocacy #ClinicalResearch #RareDiseaseResearch #PatientEngagement #PKU #CANPKU #HealthcareInnovation #ResearchPartnerships
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    42 mins
  • EP 39 Melanie Colter

    EP 39 Melanie Colter
    Mar 22 2026
    For eight years, Melanie Colter searched for answers. Her son Mason was living with Homocystinuria (HCU)—a rare metabolic disorder that often goes undetected—but no one knew it yet. There were no obvious warning signs, no dramatic turning points. Just a quiet, invisible risk beneath what appeared to be a normal childhood. Until a routine eye appointment changed everything. In this episode of Rare Awareness Radio, we sit down with Melanie to explore the emotional and medical journey of delayed diagnosis—the uncertainty, the frustration, and the resilience required to keep pushing for answers when the system falls short. She shares what it means to parent a child with HCU, where something as fundamental as protein intake must be carefully managed, and how families learn to navigate a life that balances vigilance with normalcy. But this conversation goes beyond diagnosis. It’s about transformation—from uncertainty to empowerment. From searching for answers to becoming an advocate. Melanie opens up about how she’s using her voice and experience to support other families facing similar challenges, ensuring that fewer children go undiagnosed and unsupported. This is a powerful story of persistence, perspective, and purpose. 🎧 Listen, learn, and share to help raise awareness for rare diseases like HCU. 👉 To learn more, access resources, and support the PKU and HCU community, visit CanPKU+: https://canpku.org/ For more information on Rare Awareness Radio, please visit https://rareawarenessradio.org/ and https://resonancefound.org/ #RareAwarenessRadio #RareDisease #HCU #Homocystinuria #PatientAdvocacy #CaregiverStories #RareDiseaseAwareness
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    38 mins
  • EP 38 Tanya Chute Nagy and Nicole Pallone

    EP 38 Tanya Chute Nagy and Nicole Pallone
    Mar 14 2026
    What happens when a routine newborn screening call changes your life forever? In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with two powerful advocates in the PKU community — Nicole Pallone and Tanya Chute Nagy from CanPKU+. Both Nicole and Tanya are parents of children living with Phenylketonuria (PKU) — a rare genetic metabolic disorder that requires lifelong dietary management and constant vigilance. What began as a deeply personal journey for their families has grown into a mission to support thousands of others navigating the same path. Nicole serves as Chair of the Board, and Tanya serves as CEO and President of CanPKU+, a national organization dedicated to education, advocacy, research awareness, and community support for individuals and families affected by PKU and allied disorders. In this powerful conversation, we explore: • The moment parents receive the PKU diagnosis • What daily life managing PKU really looks like • The emotional journey families experience after diagnosis • Why community support is critical in rare diseases • The advocacy work happening across Canada • How parents transform into leaders and change-makers Rare diseases can often feel isolating — but stories like these remind us that community, advocacy, and shared knowledge can change everything. CALL TO ACTION If you want to learn more about PKU, support families living with the condition, or get involved in advocacy efforts, please visit: https://canpku.org You’ll find resources, programs, and ways to support the incredible work being done for the PKU community. About Rare Awareness Radio Rare Awareness Radio brings together patients, families, researchers, clinicians, and advocates working to advance awareness, understanding, and progress across the rare disease community. Each episode shares real stories and real voices from those living and leading in the rare disease space. Please visit - https://rareawarenessradio.org/ If you found this conversation meaningful: • Like the video • Subscribe to the channel • Share this episode with someone who cares about rare disease awareness Every share helps amplify these important voices. #RareDisease #PKU #Phenylketonuria #RareDiseaseAwareness #MetabolicDisorders #PKUCommunity #PatientAdvocacy #RareAwarenessRadio
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    45 mins
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