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, 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, 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, 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

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

National Cancer Institute: https://www.cancer.gov

Head & Neck Cancer Care

Hennepin Healthcare: https://www.hennepinhealthcare.org

Innovation in Early Detection

Oncodea: https://oncodea.com

#PatientInnovations #RareDisease #NasopharyngealCarcinoma #CancerAwareness #PatientVoices #HealthcareInnovation #EarlyDetection #HealthEquity #AIinHealthcare #HealthcareMN

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, 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, 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

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

Female Sexual Health

Prosayla | Female Sexual Health Education: 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

#PatientInnovations #Menopause #HormoneReplacementTherapy #WomensHealth...