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 is a health podcast hosted by Valen Keefer, with 14 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.

Valen Keefer hosts Unpacking the Gift of Life, a health show with 14 episodes published.

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  Episode #6

  Hope on the Horizon: How Every Voice Shapes Research Innovation

  Dec 9, 202547 minS2

  The future of rare kidney disease treatment is full of hope and innovation. Valen chats with Dr. Jill Green and Dr. Pranav Garimella about groundbreaking research and why the patient voice matters when working with advocacy groups and industry to shape future treatments. Leave feeling inspired and informed about the innovations driving change in rare kidney disease care. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Dr. Pranav Garimella - Pranav Garimella, MBBS, MPH, FASN - Nephrology (Kidney) | UC San Diego Health Dr. Jill Green - Jill A. Green PKD Centers of Excellence - Centers of Excellence - Polycystic kidney disease | PKD treatment research | PKD Foundation UC San Diego PKD Center of Excellence - Polycystic Kidney Disease Care | UC San Diego Health American Kidney Fund - Join us in fighting kidney disease on all fronts | American Kidney Fund Rare Kidney Disease Action Network https://www.kidneyfund.org/rare-kidney-disease-action-network Unknown Causes of CKD Program https://www.kidneyfund.org/professionals-and-research/unknown-causes-kidney-disease-project

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  Episode #5

  On the Cutting Edge: Engaging in Rare Disease Research

  Oct 30, 202542 minS2

  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/

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  Episode #4

  Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 2)

  Oct 16, 202536 minS2

  Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org Valeos, a nonprofit data initiative improving outcomes and access for transplant patients through data collaboration – www.valeos.org Tristan Mace’s Wall Street Journal Article – www.wsj.com/health/healthcare/he-got-a-new-heart-now-this-34-year-old-is-fighting-to-fix-the-transplant-system-394a8f78? Tristan Mace – tristanmace.com Summit Nephrology, Dr. Adarsh Bhat - www.summitnephrology.com/doctors/adarsh-bhat/

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  Episode #4

  Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 1)

  Oct 16, 202543 minS2

  Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org Valeos, a nonprofit data initiative improving outcomes and access for transplant patients through data collaboration – www.valeos.org Tristan Mace’s Wall Street Journal Article – www.wsj.com/health/healthcare/he-got-a-new-heart-now-this-34-year-old-is-fighting-to-fix-the-transplant-system-394a8f78? Tristan Mace – tristanmace.com Summit Nephrology, Dr. Adarsh Bhat - www.summitnephrology.com/doctors/adarsh-bhat/

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  Episode #3

  Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)

  Oct 2, 202530 minS2

  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, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share&mibextid=wwXIfr Harmony for Hope, https://harmony4hope.org/ “Self Care While Being a Caregiver” – featuring Noah Keefer on Otsuka’s Patient Education Network, https://www.otsukapatiented.com/kidney-disease/community-stories/self-care-while-being-caregiver “The Crucial Care Partner” – Episode 5 of Letters of Hope, a docuseries on the trials and triumphs of transplantation, https://valenkeefer.com/letters-of-hope-docuseries “Understanding ARPKD” – PKD Foundation, https://pkdcure.org/about-the-disease/arpkd/ “Welcome to Holland” – Emily Perl Kingsley, https://www.emilyperlkingsley.com/welcome-to-holland

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