Hosted by Rare Awareness Radio · 🇺🇸 us · EN · 42 episodes
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Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Rare Awareness Radio hosts Rare Awareness Radio, a business show with 42 episodes published.
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 l
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 rese
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 Smit
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, n
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
Episode Description In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with John Adams, a passionate advocate and leader with CANPKU+, the Canadian organization supporting individuals and familie
Jordan Kruse | Fighting for a Cure for OTCD What happens when a newborn appears perfectly healthy… and within days everything changes? In this episode of Rare Awareness Radio, we speak with Jordan Kruse, a mother, educat
Episode Title: Advancing Hope Through Science: Dr. Bruce Morimoto on V-ATPase Disorders Episode Description: In this episode of Rare Awareness Radio, host Richard Juknavorian speaks with Dr. Bruce Morimoto, a translation
In this episode of Rare Awareness Radio, Richard speaks with Beth McKenzie and Dave Robertson, parents of Lucy and active members of the V-ATPase Alliance, a global, parent-led organization dedicated to research, advocac
In this episode of Rare Awareness Radio, Richard Juknavorian sits down with Ana Rita Moreira Moreira, Founder, Co-Founder, and President of the v-ATPase Alliance — a volunteer-led global advocacy and research movement sh
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Luis Oliveira, a neuroscientist, researcher at the Michael J. Fox Foundation, and co-founder of the V-ATPase Alliance—a global effort suppo
Rare Awareness Radio with Kristin Anderson (v-ATPase Alliance) In this deeply moving and insightful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Kristin Anderson, co-founder of the v-ATPase Al
In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Iazsmin Bauer-Ventura, an adult rheumatologist at the University of Chicago whose work centers on idiopathic inflammatory myop
Faith, Family, and the Three E’s: Holly Jones and the Power of Representation in the Myositis Community Description: In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Holly Jones —
Dr. Namita Goyal — Diagnosing Hope: Advances in Myositis and Neuromuscular Care Description: In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Namita Goyal, Professor of Neurology and D
Episode Title: Navigating Myositis: Jen Swisher on Diagnosis, Advocacy, and Resilience 📝 Episode Description: In this deeply moving episode of Rare Awareness Radio, host Richard Juknavorian sits down with Jen Swisher, a
Rare Awareness Radio — Episode Title: One Step at a Time: Ed McGrath on Love, Advocacy, and Life with Myositis In this powerful episode of Rare Awareness Radio, we sit down with Ed McGrath, a passionate rare disease advo
Turning Grief Into Purpose – Laurie Boyer, Chair of the Myositis Association 🟣 Rare Awareness Radio – A Podcast Dedicated to the Rare Disease Community In this profoundly moving episode, Richard Juknavorian speaks with
In this episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Sam Young, Director of the Gene Therapy Center at the University of North Carolina at Chapel Hill. From his early days as a Princeton f
Understanding CACNA1A: A Conversation with Dr. Kristin Baranano Episode Description: In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Kristin Baranano, a pediatric neurologist
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Rare Awareness Radio is hosted by Rare Awareness Radio. The show is categorised under business and has published 42 episodes.
Rare Awareness Radio has published 42 episodes.
Rare Awareness Radio regularly covers business. It sits in the business category.
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Episodes of Rare Awareness Radio average 40 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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