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

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/ 

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/ 

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/ 

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 

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 

Advocacy starts with finding your voice. Valen and chronic rare disease patient advocate Swapna Kakani discuss how they discovered their purpose in patient advocacy and offer practical tips for anyone wanting to make a difference. Learn how to use your voice to drive change and support the rare disease community. 

About Your Host 

Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com  

Additional Resources 

• Swapna Kakani (@swapnaspeaks), https://www.instagram.com/swapnaspeaks  
• The Gutsy Perspective – Short Bowel Syndrome Quality of Life Research, https://www.thegutsyperspective.org/ 
• Alabama Rare – Alabama rare disease policy advocacy network, www.alabamarare.org 
• State Zebra Network – rare disease state policy advocacy network, www.zebranetwork.org 
• Intestinal Rehab & Transplant Unwrapped – organization for supporting patients with intestinal failure, rehabilitation, and transplantation, www.transplantunwrapped.org 

Living with rare disease is a journey of challenges and triumphs. Valen and IgA nephropathy (IgAN) patient advocate Malkia White share their personal stories, exploring what makes the rare disease experience unique and the strength that comes from shared experiences. Tune in to hear about the power of connection in the rare disease community.

About Your Host
Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com

Additional Resources
#ThatGirlNeedsAKidney, https://facebook.com/thatgirlneedsakidney
#ThatGirlNeedsAKidney, https://instagram.com/ThatGirlNeedsAKidneyResources
IgA Nephropathy Foundation, https://igan.org/
National Organization for Rare Disorders, https://rarediseases.org/
Mental Health America, https://mhanational.org/
Learn More about Living Donation – National Kidney Donation Organization, https://www.nkdo.org/

In the final episode of Season 1 of Unpacking the Gift of Life, Valen and Cristen invite you into an open conversation where no question is off-limits. In this “Ask Us Anything” special, they tackle topics that resonate deeply within the transplant community: coping with post-transplant depression, navigating the nuances of family and friend support, managing sun exposure, staying vigilant against COVID, and safeguarding your kidneys when surrounded by children. As they reflect on the season's journey, Valen and Cristen explore the inspiration that has fueled each episode, highlighting the resilience, hope, and community that have made this season so impactful. Join them for an honest and heartfelt discussion that wraps up the season by celebrating the strength and spirit of those living with the extraordinary gift of life.

Learn more about your hosts:

• Valen Keefer, Patient Advocate, Consultant, Educator, Motivational Speaker: www.valenkeefer.com
• Cristen Wathen, Licensed Counselor and Associate Professor at Palo Alto University: https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc

Additional resources:

• Skin Cancer Resource Center: Skin Cancer Resource Center (aad.org)
• “Skin Care in the Immunosuppressed” episode of the Both Sides of the Stethoscope podcast: https://podcasts.apple.com/us/podcast/both-sides-of-the-stethoscope/id1580609482?i=1000613031353
• “Traveling with Transplant” episode of the Both Sides of the Stethoscope podcast: https://podcasts.apple.com/us/podcast/both-sides-of-the-stethoscope/id1580609482?i=1000569406245 
• Vanessa’s Travels With Transplant IG account: https://www.instagram.com/travelswithtransplant?igsh=MzRlODBiNWFlZA==
• Kate Bowler: https://katebowler.com/guide/illness-happens/
• If you or someone you know is struggling or in crisis, call or text 988 or chat at 988lifeline.org.

Communication and speaking up for ourselves is so important, yet can feel exhausting. Valen, Cristen, and their friend, Noelia, dig deep into three aspects of communication as it relates to patient advocacy. First, experiences of advocating for ourselves in our social relationships with partners, loved ones, friends, and the community at large. Second, the meaning, purpose, and value of a trusting relationship with our healthcare teams. And third, they share conversations about internal dialogue, being kind to ourselves, and emotional honesty. Tune in to learn ways to advocate for yourself, be empowered to have honest conversations, and live a meaningful life in the midst of chronic illness. 

Learn more about your hosts:

• Valen Keefer, Patient Advocate, Consultant, Educator, Motivational Speaker: www.valenkeefer.com
• Cristen Wathen, Licensed Counselor and Associate Professor at Palo Alto University: https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc

Additional resources: 

• Letters of Hope - a docuseries on the trials and triumphs of transplantation: Letters of Hope | Valen Keefer
• Chronic Illness and Assertiveness - Setting firm boundaries for better health: Chronic Illness and Assertiveness- Psychology Today
• Minority Health Resources: US Department of Health and Human Services Office of Minority Health
• Treatment Challenges in Autosomal Dominant Polycystic Kidney Disease - Continuing research, current treatment guidelines, and a look at why Black and Hispanic populations are chronically underserved: Polycystic Kidney Disease BIPOC Treatment Challenges 
• NKF Peers en Español: https://www.kidney.org/es/peers