Patients are key to advancing rare disease treatment. IgA nephropathy (IgAN) patient Russ Roberts and his nephrologist Dr. Arnold Silva discuss the role of clinical trials in rare kidney disease research and how patients and providers can work together to shape the future of treatment. Get practical advice on how to get involved in clinical research and make a difference. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, ww...
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Patients are key to advancing rare disease treatment. IgA nephropathy (IgAN) patient Russ Roberts and his nephrologist Dr. Arnold Silva discuss the role of clinical trials in rare kidney disease research and how patients and providers can work together to shape the future of treatment. Get practical advice on how to get involved in clinical research and make a difference. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, ww...
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)
Unpacking the Gift of Life
29 minutes
1 month ago
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)
Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience. About Your Host Valen Keefer – Patient Advocacy Leader, Heal...
Unpacking the Gift of Life
Patients are key to advancing rare disease treatment. IgA nephropathy (IgAN) patient Russ Roberts and his nephrologist Dr. Arnold Silva discuss the role of clinical trials in rare kidney disease research and how patients and providers can work together to shape the future of treatment. Get practical advice on how to get involved in clinical research and make a difference. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, ww...
