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...

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....

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.valen...

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...

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...

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 S...

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 #ThatG...

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'...

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 dialo...

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 how they moved forward in a positive way. Listen in to be inspired and empowered by their vulnerability and determination. Learn more about your ...

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, they discovered a wellspring of resilience, strength, and above all, hope. Listen in to hear how they learned to live well alongside PKD and be inspir...

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 mental health professionals. Hosted by: Valen Keefer - Patient Advocate, Consultant, Educator, Motivational Speaker Cristen Wathen - Licensed Cou...

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 transplant journeys motivate them to provide an honest perspective of the physical and emotional complexities of living with chronic illness. ...