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Rare Awareness Radio

Rare Awareness Radio

De: 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 Economía
Episodios
  • EP 30 Iazsmin Ventura

    EP 30 Iazsmin Ventura
    Nov 16 2025
    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 myopathies and interstitial lung disease (ILD). As part of our ongoing myositis series, this conversation brings a crucial clinical and research perspective to a disease that is frequently misunderstood, misdiagnosed, and underfunded. Dr. Ventura breaks down: - What myositis really is—and why it’s a multi-system autoimmune disease - How muscle, skin, and lung involvement intersect in complex ways - Why multidisciplinary care (rheumatology, pulmonology, dermatology, neurology) is essential - Recent advances in treatment, including IVIG and promising clinical trial pipelines - How inequities, mistrust, and insurance gaps shape patient outcomes - The urgent consequences of declining federal research funding - Practical, empowering advice for newly diagnosed patients and caregivers She also shares her personal journey—from growing up in Brazil to becoming a physician-researcher at one of the nation’s leading ILD and myositis centers. This is one of our most comprehensive and insightful episodes yet—rich with clarity, compassion, and real-world guidance for anyone affected by myositis or rare autoimmune conditions. 🌐 Learn more: Myositis Association — myositis.org Rare Awareness Radio — rareawarenessradio.org
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    39 m
  • EP 29 Holly Jones

    EP 29 Holly Jones
    Oct 26 2025
    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 — advocate, mother, and leader with The Myositis Association. Diagnosed with polymyositis at just 19 years old, Holly’s journey has been defined by faith, resilience, and an unwavering commitment to others. Today, she leads multiple initiatives across TMA — including the Women of Color Affinity Group, the Myositis Africa Support Group, and the Chair of the Development Board. Her signature 3E Framework — Encouragement, Education, and Empowerment — has become a model for support and inclusion across the rare disease community. Together, Richard and Holly discuss: - Finding hope and faith through chronic illness - How representation and cultural sensitivity strengthen rare disease advocacy - Building community through the 3E Framework - Supporting teens, young adults, and mothers living with myositis - The importance of equity, empathy, and visibility in rare disease leadership This heartfelt conversation reminds us that purpose can rise from pain — and that through connection, education, and encouragement, we can all help one another thrive. 🎧 Listen now and discover why Holly Jones embodies the true spirit of Rare Awareness. For more information, please visit https://www.myositis.org/
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    55 m
  • 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 m
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