Unpacking the Gift of Life
Unpacking the Gift of Life is a place to explore the rare kidney disease and transplant journey with hope and honesty. With your host Valen Keefer, we’re here to connect, uplift, and empower those living with rare disease.
Unpacking the Gift of Life
On the Cutting Edge: Engaging in Rare Disease Research
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Valen Keefer
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Season 2
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Episode 5
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, www.valenkeefer.com
Additional Resources
- CaRe network for patients and clinicians to locate investigators participating in clinical trials – Cardio Renal Institute, https://cardiorenalinstitute.com/
- Clinical Trials from Around the World, https://clinicaltrials.gov
- IgA Nephropathy Foundation, https://igan.org/