When Answers Are Hard to Find: Inside Rare Disease Care

Understanding Fertility: Knowing When to Seek Help and How to Support the Journey

Fertility is often reduced to timelines, statistics, and clinical conversations — but for many people, the experience is emotional, isolating, and far more complex than expected. In this episode of the Patient Innovations Podcast, we bring together a patient advocate, fertility clinician, and healthcare innovator for an honest conversation about what people should actually know about fertility before they are in crisis. Together, the guests unpack common misconceptions around age, fertility health, and when to seek help. They explore what the fertility process really looks like, why so many people feel unprepared navigating it, and how stronger education, advocacy, and support systems could change outcomes and experiences alike. The conversation also challenges how society talks about fertility — and why emotional support, community, and honest dialogue matter just as much as clinical care. TOP LEARNINGS FROM THIS EPISODE * Signs it may be time to seek fertility support sooner than expected * Why proactive fertility education and testing matter * Common myths around age, timelines, and fertility health * What the fertility evaluation and treatment process actually involves * The emotional realities many individuals and couples experience * How partners, friends, employers, and communities can better support people navigating fertility challenges * Why patient advocacy and human-centered care matter throughout the journey FEATURED GUESTS * Miraya Gran — Sharing lived experience and insights on navigating fertility challenges and advocacy * Dr. April Batcheller of CCRM — Providing clinical guidance on fertility health, testing, treatment, and patient care * Rosie Nestingen — Discussing innovation, education, and support systems in fertility care through Rebloom Health HOSTED BY * Shannon Stauff * Rashmi Kandwal CONNECT WITH OUR GUESTS * Rebloom Health [https://www.rebloomhealth.com/?utm_source=chatgpt.com] * Dr. April Batcheller at CCRM [https://www.ccrmivf.com/ccrm-fertility-doctors/april-batcheller/?utm_source=chatgpt.com] * Minnesota Building Families Leadership Team [https://minnesotabuildingfamilies.org/leadership-team/?utm_source=chatgpt.com] ABOUT THE PATIENT INNOVATIONS PODCAST The Patient Innovations Podcast brings together patients, clinicians, innovators, and healthcare leaders to explore how lived experience and human-centered innovation are reshaping healthcare.

When Answers Are Hard to Find: Inside Rare Disease Care

In this episode of Patient Innovations, Rashmi and Colleen explore one of the most complex and often misunderstood areas of healthcare: rare disease. While each condition may be considered uncommon, the lived experience is anything but rare for those affected. For many patients, it means navigating daily uncertainty, evolving symptoms, and a long and often frustrating search for answers. This conversation brings rare disease into focus through lived experience, clinical reality, and emerging innovation—highlighting both the gaps in today’s system and the opportunities ahead. We hear from three powerful perspectives: Christine Von Raesfeld [https://www.linkedin.com/in/cvonraesfeld/], rare disease patient advocate working at the intersection of patient experience, AI, and digital health, shares her personal journey navigating complex, overlapping conditions. She reflects on the emotional and physical toll of living without clear answers, and how that experience has shaped her work in advancing patient-centered data use, privacy, and engagement. Dr. Nancy Cuan [https://stanfordhealthcare.org/doctors/c/nancy-cuan.html], internal medicine physician at Stanford, offers the clinical lens on caring for patients with complex, multi-system conditions. She speaks to the challenges of diagnosis when symptoms don’t fit neatly into traditional pathways, and how care models are evolving to better support patients living with uncertainty. Pete Kane [https://www.linkedin.com/in/pwekane/], innovator in precision medicine and multi-omics, brings a forward-looking perspective on how advances in biological data and technology are beginning to uncover patterns that traditional diagnostics often miss—opening the door to more personalized, precise care for rare and complex conditions. Together, this episode explores rare disease through the lenses of the patient, the clinician, and the innovator—connecting lived experience, clinical complexity, and the future of what’s possible in healthcare. #PatientInnovations #RareDisease #CancerAwareness #PatientVoices #HealthcareInnovation #EarlyDetection #HealthEquity #AIinHealthcare #HealthcareMN

Nasopharyngeal Carcinoma

In this episode of Patient Innovations, Rashmi and Shannon dive into one of the most overlooked challenges in healthcare: rare disease detection, focusing on nasopharyngeal carcinoma (NPC), sometimes called nasal cancer. NPC forms deep in the upper throat behind the nose, and its early symptoms—persistent congestion, nosebleeds, ear fullness, hearing changes, or headaches—can feel minor and easily dismissed. Yet for many patients, these subtle signs lead to delayed diagnosis, fragmented care, and life-altering consequences. This conversation grounds NPC in lived experience, clinical insight, and innovation—highlighting where delay happens and how we can do better. The episode brings together three powerful perspectives: Michael Arulfo, Chief AI Officer and CTO at Cadre, shares his personal journey with NPC—from early symptoms that were easy to overlook to navigating diagnosis and treatment. His story reflects the emotional toll of uncertainty, moments of feeling unheard, and the importance of persistence and patient advocacy when something doesn’t feel right. Dr. Amy Anne Lassig, head and neck surgeon at Hennepin Healthcare, offers clinical clarity on why NPC is often diagnosed late. She explains how its location makes early detection difficult, how symptoms overlap with more common conditions, and how risk factors like Epstein-Barr virus can inform clinical suspicion. She also shares how clinicians approach treatment and the challenges of navigating rare cancers within complex care systems. Dan Que Pham, co-founder and CEO of Oncodea, highlights innovation in early cancer detection. She discusses how advances in blood-based diagnostics, nanophotonics, and AI are working to identify cancer earlier, reduce delays, and expand access to timely, life-saving care. Key takeaways from the conversation include: Rare diseases like NPC are often missed because early symptoms appear common and non-specific. Delays in diagnosis are shaped by both clinical complexity and system-level gaps in awareness and pathways. There is no one-size-fits-all journey; patient advocacy and persistence play a critical role in getting answers. Clinicians must balance probability with possibility, especially when symptoms persist without resolution. Innovation in early detection has the potential to significantly improve outcomes and reduce disparities. Listening to patient stories is essential to improving recognition, reducing delay, and saving lives. Links & Resources: Nasopharyngeal Carcinoma & Rare Cancer American Cancer Society: https://www.cancer.org [https://www.cancer.org/] National Cancer Institute: https://www.cancer.gov [https://www.cancer.gov/] Head & Neck Cancer Care Hennepin Healthcare: https://www.hennepinhealthcare.org [https://www.hennepinhealthcare.org/] Innovation in Early Detection Oncodea: https://oncodea.com [https://oncodea.com/] #PatientInnovations #RareDisease #NasopharyngealCarcinoma #CancerAwareness #PatientVoices #HealthcareInnovation #EarlyDetection #HealthEquity #AIinHealthcare #HealthcareMN

Menopause and Hormone Replacement Therapy (MRT/HRT)

In this episode of Patient Innovations, Rashmi and Mary dive into one of the most debated and misunderstood topics in women’s health: Menopause and Hormone Replacement Therapy (MRT/HRT). Menopause is a natural life transition, yet for many women it brings disruptive symptoms, limited access to care, and widespread misinformation. This conversation grounds menopause and hormone therapy in lived experience, clinical science, and innovation—cutting through fear and confusion. The episode brings together three powerful perspectives: Karen Bannon, spiritual care leader and educator, shares her personal menopause journey—from unexpected symptoms and their impact on daily life to navigating decisions around hormone therapy. Her story reflects the emotional toll of feeling unheard and the importance of informed, patient-centered care. Dr. Jewel Kling [https://www.linkedin.com/in/juliana-jewel-kling-md-mph-macp-mscp-if-89386142/], Professor of Medicine and nationally recognized menopause expert at Mayo Clinic, offers clinical clarity on what’s happening biologically during perimenopause and menopause. She unpacks how evidence around hormone therapy has evolved, addresses common misconceptions, and explains how clinicians personalize treatment based on timing, risk, and individual goals. Ashlie Beiter [https://www.linkedin.com/in/ashlie-beiter-225267114/], founding partner and VP of Marketing at Winona, highlights innovation in menopause care. She discusses how telemedicine and education-first models are expanding access, reducing stigma, and helping women navigate hormone therapy with confidence and trust. Key takeaways from the conversation include: 1. Menopause is a major life transition—not a niche issue—and symptoms can significantly affect quality of life. 2. Hormone therapy requires nuance, not fear, with newer research clarifying safety, timing, and personalization. 3. There is no one-size-fits-all approach; informed, individualized care is essential. 4. Access to accurate information and trained clinicians remains a gap, one that innovative care models are helping to close. 5. Listening to women’s stories is critical to improving care and normalizing menopause conversations. Links & Resources: Menopause & Hormone Therapy The Menopause Society | Homepage: https://www.menopause.org [https://www.menopause.org/] Choosing a Healthcare Practitioner | The Menopause Society: https://www.menopause.org/for-women/choosing-a-healthcare-practitioner Mayo Clinic — Menopause & Hormone Therapy: https://www.mayoclinic.org [https://www.mayoclinic.org/] Female Sexual Health Prosayla | Female Sexual Health Education: https://www.prosayla.com [https://www.prosayla.com/] Related Podcast Read. Talk. Grow. Podcast — Guides at Mayo Clinic: https://readtalkgrow.mayoclinic.org Innovation in Care Winona — Menopause Care & Education: https://bywinona.com [https://bywinona.com/] #PatientInnovations #Menopause #HormoneReplacementTherapy #WomensHealth #MidlifeHealth #HealthEquity #PatientVoices #HealthcareInnovation #MenopauseCare #HealthcareMN

Chronic Pelvic Pain

In this episode of the Patient Innovations Podcast, Rashmi Kandwal and Mary MacCarthy explore one of the most complex and underrecognized conditions affecting millions of women: chronic pelvic pain. Defined as pain in the lower abdomen or pelvis lasting longer than six months, chronic pelvic pain can stem from a wide range of causes — from uterine dysfunction and neuropathic pain to hormonal and mood-related conditions. Because the condition is multifaceted, effective treatment almost always requires an integrated, multidisciplinary approach. The conversation begins with patient guest Kaleigh Karlen, a high school science teacher from Denver whose personal journey highlights the day-to-day realities of navigating symptoms, stigma, delayed diagnosis, and fragmented care. Kaleigh shares what has helped her most — including pelvic floor therapy, electrical therapy, and lifestyle changes talks about Beating Endo, a book that helped her understand the link between endometriosis, inflammation, and diet. Her story offers a candid look at how CPP affects mental health, work, relationships, and identity, and the hope that emerges when patients finally feel heard. The clinical perspective comes from Dr. Kaitlin Baily, a Doctor of Physical Therapy specializing in pelvic health. Dr. Baily explains why chronic pelvic pain is so difficult to treat and underscores how many of her patients experience meaningful improvement through evidence-based pelvic rehab. She dispels common misconceptions, emphasizes the role of consistent PT, and outlines why multidisciplinary care is essential for long-term recovery. The episode closes with an innovation-forward discussion featuring Dr. Yingchun Zhang, Co-founder and President of HillMed and Professor of Biomedical Engineering at the University of Miami. Dr. Zhang introduces HillMed’s EMG imaging system, which produces a clear and comprehensive map of muscles and nerves to pinpoint optimal treatment and injection sites. This precision mapping is designed to support better outcomes, faster recovery, and more comfortable patient experiences, and reflects how patient feedback continues to shape HillMed’s research and design. Together, these three perspectives paint a comprehensive picture of a condition that is too often misunderstood and undertreated — and they spotlight the hope, progress, and innovation emerging in this space. #ChronicPelvicPain #PatientInnovations #HealthcareMN #PelvicPain #PublicHealth #ChronicIllness #HealthEquity #PatientStories #HealthcareInnovation #Resilience