FabryCast

Canadian Fabry Association

The FabryCast brings the human element of living with a rare disease. It’s a podcast for important conversations that teaches small bits of information, practical insights, and things you can do today to positively impact your life with Fabry.    Hear from experts in the field, have the opportunity to “Ask a Doctor Anything” and keep up to date with what's happening in the Fabry space. 

  1. 26 thg 5

    A Rare Story of Love & Loss

    Donna Strauss's journey with Fabry disease reveals how resilience, hope, and community can transform despair into purpose. After losing her husband to this rare disease, Donna shares insights on caregiving, the emotional toll of diagnosis, and her commitment to advocacy. Discover how education and community can empower families to face the future with courage. Donna’s story underscores a vital message: even in the darkest hours, hope and community are your greatest allies, reminding us that strength is the courage to keep moving forward.

    30 phút

  2. 27 thg 4

    Jerry Walter's Life with Fabry: Resilience in Action

    Learn about Jerry Walter's extraordinary journey living with Fabry disease, including his experiences with cardiac complications, a heart transplant, and his inspiring perspective on resilience and living a full life. This episode offers valuable insights into managing Fabry disease and the power of a positive mindset.

    40 phút

  3. 26/12/2025

    Fabry & The Kidneys with Dr. Michael West

    In this episode, we're joined by Dr. Michael West, a leading nephrologist, to explore the impact of Fabry disease on kidney health. We discuss the early signs of kidney involvement, the importance of regular monitoring, and the latest advancements in treatment options. Dr. West shares his expertise on managing kidney function and offers hope for future therapies. Discover how proactive steps can protect kidney health and enhance the quality of life for individuals affected by Fabry disease.

    51 phút

  4. 17/07/2025

    Intentional Living and Awareness with Linda Quaranta

    In this episode, we are joined by Linda Quaranta - a licensed EMDR therapist who also happens to be living with Fabry disease herself. What you'll discover:*How to find purpose while managing chronic illness*The powerful connection between trauma and physical health*How EMDR therapy can be a game-changer for healing emotional wounds*Real strategies for building resilience and community support Linda opens up about her personal Fabry journey and shares professional insights on how intentional living and awareness can transform our relationship with chronic illness. This isn't just about surviving - it's about thriving. Perfect for: Anyone navigating health challenges, caregivers, or those interested in the mind-body connection and trauma healing.

    47 phút

  5. 18/06/2025

    A Modern Era in Cardiac Care: Fabry Disease, AI, & the Power of Partnership with Dr. John Jefferies

    In this conversation, Dr. John Jeffries discusses the complexities of Fabry disease and the importance of a strong patient-physician partnership in managing cardiac care. He emphasizes the role of wearables and AI in monitoring patient health, the significance of early warning signs, and the need for effective communication between patients and providers. Dr. Jeffries also addresses common myths about Fabry disease and highlights the potential for future advancements in care, advocating for patient empowerment and lifestyle changes to improve health outcomes.

    42 phút

  6. 18/03/2025

    Fabry and Mental Health with Christine Leighland

    How does Fabry disease impact mental health? What role do anxiety, pain management, and emotional well-being play in the patient journey? Julia Alton and Christine Leighland explore these questions, discussing coping strategies like mindfulness and cognitive behavioral therapy. How can acceptance and self-compassion make a difference? Why is psychotherapy so important? They also dive into the Be Rare, Be You campaign, the challenges of tough decisions, and the vital role caregivers play.

    53 phút

  7. 19/02/2025

    Decision Fatigue with Jennifer Siedman

    Julia Alton and Jennifer Siedman delve into the complexities of decision-making, particularly in the context of chronic illness and rare diseases. They explore the concept of decision fatigue, the emotional toll it takes on caregivers and patients, and the importance of understanding one's decision-making style. Jennifer shares insights from her personal experiences and professional expertise, emphasizing the need for emotional awareness and support in the decision-making process. The discussion also highlights the challenges of navigating clinical trials and the significance of shared decision-making in fostering empowerment and confidence.

    35 phút

  8. 06/12/2024

    The Critical Role of Biomarkers in Rare Diseases with Christiane Auray-Blais

    This conversation delves into the complexities of Fabry disease, a rare lysosomal storage disorder, and the critical role of biomarkers, particularly Lysogb3, in diagnosis and treatment monitoring. The discussion highlights the importance of awareness among healthcare providers, the significance of early detection, and the advancements in research aimed at improving patient outcomes. Christiane Oribelle shares her insights on the methodologies used in biomarker analysis and the implications for patient care, emphasizing the need for compliance and proactive communication between patients and their healthcare teams.

    22 phút
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Trailer

Giới Thiệu

The FabryCast brings the human element of living with a rare disease. It’s a podcast for important conversations that teaches small bits of information, practical insights, and things you can do today to positively impact your life with Fabry.    Hear from experts in the field, have the opportunity to “Ask a Doctor Anything” and keep up to date with what's happening in the Fabry space. 

Thông Tin

  • Nhà sáng tạo
    Canadian Fabry Association
  • Năm hoạt động
    2024 - 2026
  • Tập
    16
  • Xếp hạng
    Sạch
  • Bản quyền
    © Canadian Fabry Association
  • Trang web chương trình
    FabryCast