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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 42 CAKPKU+ Wrap Up with Tanya Chute Nagy and Nicole Pallone

    EP 42 CAKPKU+ Wrap Up with Tanya Chute Nagy and Nicole Pallone
    May 23 2026
    In this special wrap-up episode of Rare Awareness Radio’s CANPKU+ series, we reconnect with Nicole Pallone and Tanya Chute Nagy from the leadership team at CANPKU+ to reflect on the powerful conversations, stories, and lessons shared throughout the series. Together, we explore the realities of living with PKU and rare metabolic disorders, the importance of advocacy and community, the ongoing fight for equitable access to treatment, and the hope emerging through research and innovation. This conversation goes beyond healthcare. It’s about resilience, parent advocacy, sustainability, human connection, and the extraordinary strength of families navigating the rare disease journey every single day. Throughout the series, we’ve had the privilege of speaking with advocates, clinicians, researchers, and caregivers who are helping shape the future of rare disease awareness and support. In this final chapter, Nicole and Tanya help us bring those conversations together while reminding listeners that no family should ever feel alone in this journey. Topics include: • PKU Awareness Month • Rare disease advocacy • Equity and access to care • Community-building and patient support • Research and emerging treatments • The emotional realities of caregiving • The future of PKU treatment and rare disease innovation Learn more about CANPKU+ and support their mission at https://canpku.org/ #RareDisease #PKU #RareAwarenessRadio #CANPKU #PatientAdvocacy #MetabolicDisorders #RareDiseaseAwareness #HealthcareEquity #PKUAwarenessMonth #CommunitySupport
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    44 mins
  • EP 41 Beth Potter

    EP 41 Beth Potter
    May 3 2026
    What if the biggest breakthroughs in rare disease aren’t just new treatments… but better data, stronger collaboration, and listening to patients? In this powerful episode, we sit down with Dr. Beth Potter, a leading researcher at the University of Ottawa, to uncover the hidden engine driving rare disease progress: registries, research, and real-world evidence. From the early days of newborn screening to today’s rapidly evolving treatment landscape, Dr. Potter takes us inside the fight to better understand conditions like PKU (Phenylketonuria)—and why we’re still far from “solving” them. In this episode, we explore: Why rare disease registries could change everything The truth about living with PKU beyond childhood How patient voices are reshaping research priorities The barriers no one talks about (data, privacy, fragmented systems) Why collaboration—not competition—is the future of rare disease innovation The takeaway? Breakthroughs don’t happen in silos. They happen when researchers, patients, and communities come together—globally. This episode is part of our ongoing series with CanPKU+ and the INFORM RARE Research Network, spotlighting the people pushing rare disease research forward. 🎧 Whether you're in healthcare, research, policy—or part of the rare disease community—this conversation will change how you think about progress. 👉 Listen now. Share widely. Be part of the movement. For more on CanPKU+, visit - https://canpku.org/ For more on INFORM RARE, please visit - https://www.informrare.ca/ #RareDisease #PKU #HealthcareInnovation #PublicHealth #PatientVoice #ResearchMatters #RareAwarenessRadio
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    31 mins
  • 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
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