Amplify: A Podcast Powered by Patient Voice Partners

From Caregiver to Changemaker: Transforming Rare Disease Advocacy Through Policy

Episode Summary What does it take to turn personal caregiving experience into lasting healthcare change? In this episode of Amplify: Elevating Patient Voices, Ursula Mann and co-host Barry Liden welcome Annie Kennedy, Chief Mission Officer of the EveryLife Foundation for Rare Diseases and one of the leading voices in rare disease advocacy and policy. Annie shares her journey from aspiring physician to caregiver after a loved one was diagnosed with an ultra-rare and aggressive cancer. That experience exposed the gaps in healthcare systems for rare disease patients and families, inspiring her to dedicate her career to advocacy and policy change. The conversation explores the evolution of rare disease advocacy, the creation of patient-centered policies, the importance of patient experience data, and how caregivers and patient communities can influence decisions that shape research, clinical trials, regulatory reviews, and access to treatments. Annie also discusses the work of the EveryLife Foundation and why empowering patients and caregivers to engage in advocacy remains essential for driving meaningful change. Why You Should Listen If you are a patient, caregiver, advocate, healthcare professional, policymaker, or anyone interested in how healthcare systems evolve, this episode offers valuable insights into how real-world experiences can influence national policy and improve outcomes for entire communities. You'll learn: * How caregiving experiences can become catalysts for large-scale change * Why rare disease communities have led many of the advances in patient-centered healthcare * What patient experience data is and why it matters * How advocacy efforts helped shape the 21st Century Cures Act * Why collaboration between patients, advocates, researchers, industry, and regulators is critical * How individuals can become effective advocates regardless of their background Episode Highlights 04:16 – Annie shares how a loved one's rare cancer diagnosis changed her career path from medicine to caregiving and advocacy. 07:49 – Discovering that many rare disease families weren't facing a broken system—but a system that simply didn't exist. 10:38 – Annie's advice to caregivers: give yourself grace and permission to learn as you go. 12:36 – The mindset that fueled her advocacy work: "It's our table." 14:34 – How Annie helped introduce advocacy efforts within the Muscular Dystrophy Association. 17:23 – The origins of patient-focused drug development and efforts to ensure patient voices influence regulatory decisions. 18:48 – How the Patient-Focused Impact Assessment Act became part of the 21st Century Cures Act. 19:44 – What patient experience data means and why it plays a critical role in healthcare decision-making. 22:37 – Annie explains patient preference studies and how they help determine meaningful treatment benefits and acceptable risks. 25:14 – The mission of the EveryLife Foundation and its work to advance evidence-based rare disease policy. 27:36 – Findings from the National Economic Burden of Rare Disease Study and what they reveal about the financial realities faced by families. 29:33 – Annie reflects on the accomplishments she's most proud of, including developing future generations of patient advocates. 31:17 – A personal glimpse into life outside advocacy as Annie shares what it's like being the mom of a teenager preparing for college. Links * Learn more about EveryLife Foundation for Rare Diseases https://everylifefoundation.org/ [https://everylifefoundation.org/] * Learn more about Patient Voice Partners https://patientvoicepartners.com/ [https://patientvoicepartners.com/] * Connect with Patient Voice Partners on LinkedIn https://www.linkedin.com/company/patient-voice-partners/ [https://www.linkedin.com/company/patient-voice-partners/] * Listen to more Amplify episodes https://patientvoicepartners.com/podcast/ [https://patientvoicepartners.com/podcast/] * Interested in sharing your story or becoming a guest? https://patientvoicepartners.com/contact/ [https://patientvoicepartners.com/contact/] Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Rewriting the Rules of Women’s Health: Power, Policy, and Patient Voice

Episode Summary In this powerful episode of Amplify, Carmen Wyton [https://www.linkedin.com/in/carmenwyton/] joins Ursula Mann and Anne Marie for a bold conversation about the invisible gaps in women’s healthcare — and the movement to change them. Carmen shares how her experience listening to women with uterine fibroids, many of whom waited over a decade for diagnosis and treatment, sparked the creation of the Women’s Health Coalition of Alberta, which later evolved into the Women’s Health Coalition of Canada. Together, they unpack the systemic biases that have historically reduced women’s health to “bikini medicine,” discuss the importance of lived experience in shaping policy, and explore the groundbreaking Bill S243 — a proposed legal framework designed to ensure women’s health remains a national healthcare priority in Canada. This conversation goes beyond healthcare. It’s about advocacy, accountability, economic impact, prevention, and empowering women to speak openly about their health experiences. Carmen explains why this movement is not just about one disease or condition — it’s about transforming an entire healthcare system for future generations. Why You Should Listen *  Learn why women’s health has remained systemically overlooked for decades  *  Understand what Bill S243 could mean for healthcare in Canada  *  Hear how advocacy organizations differ from traditional patient groups  *  Discover how patient voice and lived experience are driving policy change  *  Explore the economic and societal impact of investing in women’s health  *  Be inspired by a movement focused on collaboration over competition  Episode Highlights *  Why women’s health became an “invisible gap” in healthcare  *  The problem with “bikini medicine” and reproductive-only thinking  *  How uterine fibroid patient stories sparked a national movement  *  The creation and rapid growth of the Women’s Health Coalition of Canada  *  What makes Bill S243 groundbreaking legislation  *  Why accountability matters more than temporary health strategies  *  The role of advocacy, collaboration, and grassroots action in policy reform  *  How women’s health impacts families, workplaces, and the economy  *  Why women’s stories need to be told publicly and unapologetically  *  Carmen’s vision for the future — and her dream celebration in Paris Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

From Motherhood to Medicine: Curiosity, Connection, and Reinvention

Episode Summary > This episode is sponsored by Medlior Health Outcomes Research [https://www.medlior.com/]. Sponsorship supports Amplify, while all conversations and perspectives remain independently produced. In this episode of Amplify: Elevating Patient Voices, Ursula Mann and Anne Marie Hayes sit down with Neelam Bance [https://www.linkedin.com/in/neelambance/] for a thoughtful conversation about leadership, lived experience, healthcare innovation, and the importance of listening deeply to patients and caregivers. Neelam shares reflections from her personal and professional journey — including motherhood, identity, advocacy, and leadership — and how these experiences shaped her perspective on creating more human-centered healthcare systems. The discussion explores the value of curiosity, empathy, and meaningful collaboration in driving change across healthcare and patient engagement spaces. From recognizing barriers within systems to understanding the emotional realities behind patient experiences, this episode highlights why lived experience must remain at the center of innovation and decision-making. This conversation is reflective, inspiring, and filled with insights for healthcare leaders, patient advocates, caregivers, and anyone passionate about creating more compassionate systems of care. Why You Should Listen * Learn why listening to lived experience is essential in healthcare innovation * Hear Neelam’s perspective on balancing leadership, motherhood, and advocacy * Explore the importance of empathy and curiosity in driving meaningful change * Understand how patient-centered thinking can improve healthcare systems and conversations * Gain insights into leadership rooted in humanity, connection, and collaboration Episode Highlights * 00:00 – Introduction to Neelam Bance and her journey in healthcare leadership * 03:12 – The importance of lived experience in shaping healthcare conversations * 07:45 – Balancing leadership, motherhood, and personal identity * 12:30 – Why empathy and curiosity are essential in innovation * 18:05 – Challenges within healthcare systems and the need for patient-centered thinking * 24:18 – Building meaningful collaboration between patients, caregivers, and healthcare leaders * 30:42 – Reflections on advocacy, listening, and creating lasting change * 36:10 – Final thoughts on leadership, humanity, and the future of healthcare Links LinkedIn https://www.linkedin.com/in/neelambance/ [https://www.linkedin.com/in/neelambance/] MedGeneius https://www.linkedin.com/company/medgeneius/ [https://www.linkedin.com/company/medgeneius/] ODINsight https://odinsight.ca/ [https://odinsight.ca/] Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations. Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.

Listening to the Heart: Lived Experience as a Catalyst for Better Cardiac Care

What happens when surviving cancer in your 20s leads to a completely different health journey decades later? In this powerful episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Anne-Marie Hayes sit down with Jackie to explore the realities of women’s heart health, delayed diagnosis, and why patient-led advocacy is changing the future of care. After surviving Non-Hodgkin’s Lymphoma at 24, Jackie went on to build a successful career in fashion and live what she thought was a healthy, “normal” life — until nearly 20 years later, she experienced chemotherapy-induced heart failure. What began as flu-like symptoms eventually led to a diagnosis of cardiomyopathy, opening her eyes to the long-term “legacy” cancer treatment can leave behind. Today, Jackie is a passionate advocate working to improve awareness, access to care, and support systems for women living with heart disease. She shares why women are still too often misdiagnosed, how heart disease symptoms can look very different in women, and why advocacy starts with simply believing that your health matters. This episode is an urgent and empowering conversation about equalizing care, listening to lived experience, and ensuring women are no longer treated as “small men” in cardiovascular medicine. Why You Should Listen * Learn how chemotherapy and cancer treatments can impact heart health decades later * Hear why women’s heart disease symptoms are still frequently overlooked or misdiagnosed * Understand the growing connection between gynecology, hormones, and cardiology * Discover the importance of patient-led support communities and advocacy * Gain practical insights into heart health risk factors every woman should know * Explore how Canada and global organizations are working to improve women’s cardiac care Episode Highlights * 00:32 – Why women’s heart health remains under-researched and misunderstood * 04:35 – Jackie’s cancer diagnosis at 24 and the long-term effects of treatment * 06:32 – Discovering chemotherapy-induced cardiomyopathy nearly 20 years later * 07:54 – The moment Jackie’s mother pushed her to request an EKG * 09:49 – The alarming statistics around women and heart disease misdiagnosis * 12:42 – Feeling isolated while searching for trustworthy patient support * 16:48 – Jackie’s advice for women: “Put yourself first” * 18:12 – Hidden heart disease risk factors linked to hormones, pregnancy, and autoimmune conditions * 22:48 – Why women are still being treated as “small men” in research and medication dosing * 25:30 – What “bikini medicine” means and why it limits women’s care * 28:24 – Canada’s progress in women’s heart health and the new national women’s health framework * 30:43 – Jackie’s “Heart Warrior Queens” philosophy: love boldly, live bravely, lead your own journey Resources & Organizations * HeartLife Foundation [https://heartlife.ca/?utm_source=chatgpt.com] * HeartLife Women / Life in Hearts * Canadian Women’s Heart Health Alliance [https://cwhha.ca/?utm_source=chatgpt.com] * Global Heart Hub [https://globalhearthub.org/?utm_source=chatgpt.com] * Bill S-243: An Act to establish a national framework for women’s health in Canada [https://www.parl.ca/DocumentViewer/en/45-1/bill/S-243/first-reading?utm_source=chatgpt.com] About Jackie Jackie is a patient advocate living with chemotherapy-induced heart failure following treatment for Non-Hodgkin’s Lymphoma in her 20s. After nearly two decades working in the fashion industry as an apparel buyer, her diagnosis inspired her to dedicate her life to advocacy and women’s heart health awareness. She is the

From Wheezing to Leadership: Living with Asthma and Leading Change

Episode Summary > This episode is sponsored by Medlior Health Outcomes Research [https://www.medlior.com/]. Sponsorship supports Amplify, while all conversations and perspectives remain independently produced. In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Anne Marie Hayes are joined by Jeff Beach, President & CEO of Asthma Canada. Jeff shares his deeply personal journey—from a childhood marked by severe allergies to a life-changing asthma diagnosis in adulthood—and how that experience shaped his path into patient advocacy and leadership. The conversation explores the realities of living with asthma, including common misconceptions, the importance of proper disease management, and what “good control” truly looks like. Jeff also provides a behind-the-scenes look at leading a national patient organization—navigating funding, maintaining independence, and ensuring patient voices remain at the center of healthcare decisions. With World Asthma Day approaching, this episode is both timely and powerful—reminding us that asthma is not just occasional wheezing, but a chronic condition that requires awareness, action, and advocacy. Why You Should Listen * Understand the difference between controlled and uncontrolled asthma * Learn how lived experience shapes healthcare leadership and advocacy * Discover why asthma is often misunderstood—and underestimated * Hear practical insights on managing triggers and improving daily life * Get inspired by stories of resilience, including patients who went from struggling to walk to running marathons * Gain perspective on how patient organizations operate, stay independent, and drive change Episode Highlights 00:01 – Introduction to Amplify & today’s conversation Setting the stage: patient voices and why this discussion matters. 04:39 – Jeff’s journey with asthma From childhood allergies to an unexpected diagnosis in adulthood. 07:21 – The reality of diagnosis Why asthma can be difficult to identify—especially in children. 11:22 – Rescue vs. controller medication What proper asthma management really looks like. 13:14 – Signs your asthma is not controlled Common misconceptions and warning signs to watch for. 14:12 – Can people with asthma stay active? Breaking the myth—why movement is part of better control. 18:38 – From lived experience to leadership Jeff’s path into patient advocacy and nonprofit leadership. 23:36 – Funding, independence, and trust How patient organizations operate and stay patient-centered. 27:53 – The role of patient voices in healthcare Why advocacy and storytelling drive real change. 31:17 – Looking ahead: World Asthma Day Shifting from awareness to taking asthma seriously. Links & References * Asthma Canada: https://asthma.ca/ [https://asthma.ca/] * Asthma Canada YouTube: https://www.youtube.com/user/AsthmaSocietyCanada [https://www.youtube.com/user/AsthmaSocietyCanada] * Asthma & Allergy HelpLine: https://asthma.ca/what-we-do/helpline/ [https://asthma.ca/what-we-do/helpline/] * Patient Voice Partners: https://patientvoicepartners.com [https://patientvoicepartners.com] *  Medlior Health Outcomes Research: https://www.medlior.com/ [https://www.medlior.com/] Medical Disclaimer: The content shared on Amplify is for informational and educational purposes only. Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—sho