Best Valen Keefer Podcasts (2025)

1
Hope on the Horizon: How Every Voice Shapes Research Innovation 46:56

Play Pause

16d ago46:56

46:56

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 ra…

1
On the Cutting Edge: Engaging in Rare Disease Research 42:13

2M ago42:13

42:13

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 researc…

1
Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 2) 36:02

2M ago36:02

36:02

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…

1
Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 1) 42:57

2M ago42:57

42:57

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…

1
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2) 29:36

3M ago29:36

29:36

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 tran…

1
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 1) 39:36

3M ago39:36

39:36

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 tran…

1
Action in Advocacy: The Patient’s Guide to Finding Your Voice 34:03

3M ago34:03

34:03

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 – Pati…

1
Let’s Walk Together: Our Journeys with Rare Kidney Disease 37:41

4M ago37:41

37:41

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…

1
Focus on the Rising with Lisa Batista 53:19

4M ago53:19

53:19

On today’s episode of ‘Wait, How Do You Spell That? A Rare Disease podcast brought to you by Patient Worthy. We are thrilled to share with you a story that is as powerful as it is inspiring. Our guest today is Lisa Batista, author of the newly released memoir, "Falling: A Journey of Strength, Survival and Rising," which is now available on Amazon, …

1
S2 E7. Unraveling AMKD: How APOL1 Impacted Sharron Rouse's Transplant Journey 44:50

8M ago44:50

44:50

As our understanding of APOL1-Mediated Kidney Disease (AMKD) grows, so does the need for greater awareness. National APOL1-Mediated Kidney Disease (AMKD) Awareness Day is observed annually on the last Tuesday of April. In this episode of Kidney Transplant Conversations, we share an inspiring story of resilience, advocacy, and hope. Sharron Rouse op…

1
Navigating the Patient's Journey featuring Brenda Snow 57:59

8M ago57:59

57:59

Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses. You can find B…

1
S2 E6. Six Kidney Donation Questions & Reflections. Liz, Grace & Shelley - Part 2 39:24

1y ago39:24

39:24

In part 2 of our discussions with Liz, Grace & Shelley, we invite our guests to reflect on six specific questions about their experiences of giving and receiving, and the world of kidney donation. 1. One thing that has been most wonderful about this experience 2. One thing that has been most surprising 3. One thing that has been really difficult 4.…

1
The Role of AI in Medicine feat. Joe Lennerz, BostonGene 38:33

1y ago38:33

38:33

On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunolo…

1
S2 E5. Giving thanks for kindness, science and cooperation during Thanksgiving week. Liz, Grace & Shelley Part 1. 36:57

1y ago36:57

36:57

S2 E5. Giving thanks for kindness, science and cooperation during Thanksgiving week. A kidney paired donation story. Liz, Grace & Shelley - Part 1 What if you saw a billboard asking for a volunteer to donate a kidney and “share your spare” to save someone’s life? What if it just made immediate sense to you, and you found yourself saying yes? Meanwh…

1
Spreading PAH Awareness featuring Steve Smith 25:38

1y ago25:38

25:38

In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, bel…

1
S2 E4. Mingling with the Crowds at the Transplant Games of America's Parade, 5K, and Ceremonies - Part 2 28:32

1y ago28:32

28:32

Welcome to the latest episode of Kidney Transplant Conversations, where we continue our exploration of the Transplant Games of America in San Diego. This inspiring event, bringing together organ donors, recipients, and their families, marks a joyful reunion after the challenges posed by the pandemic. The San Diego games also celebrates it's uniquel…

1
S2 E3. Celebrating Love of Life and Second Chances at the Transplant Games of America. With Team North Carolina - Part 1 23:09

1y ago23:09

23:09

With members of Team North Carolina as our guide, we delve into the vibrant world of the Transplant Games of America. Discover the rich history of these games, which began in 1978 in England and have since evolved into a significant event for transplant recipients and donor families in the U.S. Hosted by the Transplant Games of America, this bi-ann…

1
S2 E2. Finding Your Voice: An Organ Transplantation Journey from Childhood to Advocate with Valen Keefer 28:02

1y ago28:02

28:02

In this compelling episode of Kidney Transplant Conversations, Valen Keefer joins us to share her extraordinary journey through the world of organ transplantation. From a young age, Valen faced the challenges of living with a chronic illness, navigating the complexities of kidney and liver transplants. Her story is one of resilience, advocacy, and …

1
S2 E1. A Christmas Miracle: Shana Pereira's Journey of Hope and Resilience 47:49

1y ago47:49

47:49

In this heartwarming episode of "Kidney Transplant Conversations," host Rolf Taylor sits down with Shana Pereira, a remarkable woman who received both a kidney and heart transplant on Christmas Day. Shana shares her extraordinary journey, beginning with the discovery of her kidney failure on a previous Christmas Eve, and the numerous challenges she…

1
All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point 26:49

1y ago26:49

26:49

In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, resea…

1
Ask Us Anything 29:41

1+ y ago29:41

29:41

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 suppor…

1
PKD and the Gift of Life, feat. Patient Advocate Valen Keefer 40:10

1+ y ago40:10

40:10

In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story. Connect with …

1
Advocating for Ourselves in Social and Healthcare Relationships 43:48

1+ y ago43:48

43:48

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. Sec…

1
The Power of Resiliency, Feat. Multiple Myeloma Patient Advocate Keisha Hickson 50:02

1+ y ago50:02

50:02

In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resilie…

1
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

1+ y ago42:39

42:39

This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: W…

1
Three Unique Perspectives on Having Children: Pre- and Post-Transplant 47:51

1+ y ago47:51

47:51

Valen, Cristen, and their friend, Elizabeth, share their individual paths of whether to have children, what led to their choices, and how ADPKD and transplant shaped their decision-making. They acknowledge the emotions surrounding their difficult decisions, share personal stories on how they navigated and embraced having or not having a child, and …

1
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

1+ y ago19:48

19:48

In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their can…

1
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

1+ y ago33:03

33:03

In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect wi…

1
Living Well Alongside Chronic Illness 32:08

1+ y ago32:08

32:08

We never forget the day we receive a life-altering diagnosis. Valen and Cristen share their pivotal moments of being diagnosed with polycystic kidney disease (PKD). With Valen being diagnosed as a child, they discuss the lessons learned from living with ADPKD from youth to adulthood. Through the challenges surrounding a lifelong health journey, the…

1
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC 34:52

1+ y ago34:52

34:52

In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…

1
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz 18:08

1+ y ago18:08

18:08

In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …

1
The Importance of Being Proactive with Our Emotional Wellbeing 30:05

1+ y ago30:05

30:05

Valen and Cristen delve into the profound world of emotions surrounding chronic illness. They discuss mental health stigma, the lack of support and resources, and why being proactive with our mental health is so important. You’ll learn insights into how to become an advocate for your emotional wellbeing and strategies for accessing and working with…

1
The MS Poltergeist, feat. Patient Advocate Jennifer Angus 43:48

1+ y ago43:48

43:48

In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Rega…

1
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale 36:30

1+ y ago36:30

36:30

In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…

1
Meet Your Hosts and Learn the Meaning Behind Unpacking the Gift of Life 26:30

1+ y ago26:30

26:30

Hosts Valen and Cristen share how their unique yet parallel experiences of living with polycystic kidney disease (PKD) led to their serendipitous friendship and passion for patient advocacy. This episode introduces the two women and how they inspired the power of hope in each other before meeting. Valen and Cristen also explore how their PKD and tr…

1
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

2y ago27:37

27:37

In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since h…

1
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J. 38:13

2y ago38:13

38:13

This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a W…

1
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

2y ago48:39

48:39

In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial f…

1
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx 25:12

2y ago25:12

25:12

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for ra…

1
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman 43:28

2y ago43:28

43:28

On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping t…

1
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

2y ago24:26

24:26

In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very f…

1
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

2y ago25:27

25:27

In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and…

1
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

2y ago24:23

24:23

For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" expe…

1
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

2y ago8:13

8:13

Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today. Read more about Justin's…

1
S1 E13. Mike needed a kidney transplant, & some help with social media. Andrea answered the call…with some unexpected results. 37:18

2+ y ago37:18

37:18

Mike was just seven years old when he lost his father to kidney disease, and many years later he learned that he was at an advanced stage of the inherited condition called polycystic kidney disease (PKD), and his kidneys were slowly failing. 2019 was a very challenging year and Mike experienced multiple medical issues. He knew he needed a transplan…

1
S1 E12. How Jim became a kidney donor to his “brother” Darryl. Plus: Dr. Adam Bregman discusses helpful resources for living donation and some kidney transplant disparities. 40:44

3y ago40:44

40:44

In the previous episode we heard Darryl’s story, how he needed a kidney transplant because of kidney cancer. This week we meet Jim, who responded to “The Big Ask,” and donated a kidney to his close friend Darryl. Jim shares with us his side of the story, explaining why doing this for his “brother” was so important to him, and he describes his overa…

1
How to Support the Supporters, feat. The Courageous Parents Network 28:26

3y ago28:26

28:26

We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their websi…

1
Working Toward the Future, Feat. GACI Global and Inozyme Pharma 22:18

3y ago22:18

22:18

On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal miner…

1
The IRSF: 40 Years of Making Connections 26:46

3+ y ago26:46

26:46

Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you …

1
S1 E11. After surviving kidney cancer and receiving a living donor kidney transplant, Darryl donates his experience in return – as a mentor and guide. 29:53

3+ y ago29:53

29:53

In our last episode, the first of several episodes celebrating National Donate Life Month, we sat down with Jennifer Martin from the National Kidney Foundation and learned about “The Big Ask, The Big Give”, a program dedicated to helping people with chronic kidney disease find their living kidney donor. In this episode we meet military veteran Darr…