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 careg...
26 Mai 30min
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 li...
27 Apr 40min
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 i...
17 Jul 202547min
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 wea...
18 Jun 202541min
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, d...
18 Mar 202552min
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 emo...
19 Feb 202535min
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. Th...
6 Des 202422min
