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Rare Awareness Radio

Rare Awareness Radio

By: Rare Awareness Radio
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About this listen

 Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.All rights reserved Economics
Episodes
  • EP 28 Namita Goyal

    EP 28 Namita Goyal
    Oct 11 2025
    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 Director of Neuromuscular Medicine at UCI Health, to explore how advances in science and collaboration are reshaping the landscape for people living with myositis and related neuromuscular diseases. Dr. Goyal reflects on the case that sparked her two-decade passion for myositis care and research, explaining why early recognition, antibody testing, and a multidisciplinary approach are essential for improving outcomes. She also discusses: The five main subtypes of myositis and how they differ The ongoing “diagnostic odyssey” faced by many patients Evolving standards of diagnosis and treatment The promise of new clinical trials, IVIG therapy, and steroid-sparing strategies The critical role of physical therapy, respiratory care, and social support Her work with The Myositis Association (TMA) and its growing network of patient resources Through clinical insight and compassion, Dr. Goyal highlights why awareness, advocacy, and access remain at the heart of progress in rare disease care. 🌐 Learn more and connect with The Myositis Association at myositis.org 🎧 Rare Awareness Radio shares stories and expert perspectives that illuminate the realities — and the hope — of living with rare conditions.
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    41 mins
  • EP 27 Jen Swisher

    EP 27 Jen Swisher
    Sep 29 2025
    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 physician assistant, professor, mom of three, and dermatomyositis patient living with the TIF1-gamma autoantibody. Jen shares her extraordinary journey through years of misdiagnoses, delayed care, and debilitating symptoms—culminating in a diagnosis that changed her life. From her early medical career in emergency medicine and pharma, to becoming a full-time working mother navigating a rare autoimmune condition, Jen reflects on how her personal and professional worlds collided. Together, Richard and Jen discuss: What dermatomyositis is, and how it’s often overlooked The realities of IVIG, Rituxan, and immunosuppressive therapy The emotional toll of parenting with chronic illness Challenges within our healthcare system—especially for rare disease patients Her growing advocacy work with the Myositis Association (TMA) And why support networks for young, working patients are urgently needed This episode is about more than just a disease—it's about strength, empathy, and pushing for change in how we care for those with rare conditions. Whether you're a patient, caregiver, healthcare professional, or advocate, Jen’s story will move and inspire you. 🔗 Resources & Links: The Myositis Association: www.myositis.org Rare Awareness Radio: www.rareawarenessradio.org 💬 Join the conversation by using #RareAwarenessRadio and tagging us on social! 🎙️ Subscribe, rate, and share to help amplify voices in the rare disease community.
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    47 mins
  • EP 26 Ed McGrath

    EP 26 Ed McGrath
    Sep 14 2025
    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 advocate, loving husband, and longtime partner to Marilyn McGrath, who lives with dermatomyositis—a rare autoimmune disease affecting the skin and muscles. Ed shares their deeply personal journey, beginning with the earliest signs of Marilyn’s illness during an anniversary trip, through a frustrating two-year search for a correct diagnosis. He recounts how they finally found hope and community through the Myositis Association (TMA), attending their first conference in 2013 and never looking back. You’ll hear about: - The emotional and physical toll of dermatomyositis - The impact of misdiagnosis and delayed care - The life-changing power of IVIG therapy - Navigating insurance and advocating for access - Ed and Marilyn’s role as mentors to newly diagnosed families - How community, education, and legislative action can spark change in the rare disease space Whether you're a caregiver, patient, clinician, or advocate, Ed's story is a testament to the strength of partnership, the importance of being your own advocate, and the real-world impact of rare disease awareness. 🔗 Learn more or get involved: 👉 https://www.myositis.org 👉 https://www.rareawarenessradio.org 🎙️ Hosted by Richard Juknavorian 💬 Subscribe, share, and help us amplify the voices of the rare disease community. #RareAwarenessRadio #Dermatomyositis #MyositisAwareness #CaregiverStories #RareDisease #PatientAdvocacy #IVIG #TMA #ChronicIllness #HealthEquity
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    33 mins
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