Amplify: A Podcast Powered by Patient Voice Partners

Ursula Mann, Brent Korte, Anne Marie Hayes, Christine Pisapia

Amplify brings you real stories and bold conversations — from patients and caregivers to clinicians, advocates, innovators, and system leaders. Together, we explore the human side of healthcare and the bold ideas that make it better. Powered by Patient Voice Partners, this podcast elevates lived experience to shape better care, access, and policy. Tune in to hear what healthcare looks like — when people are finally heard.

  1. 4d ago

    When Lived Experience Becomes a Calling: Building Advocacy Around IBD and Better Care

    What does it take to turn lived experience into lasting change for patients? Gail Attara joins Ursula Mann and Anne-Marie Hayes to share how growing up with a mother living with Crohn’s disease shaped her commitment to advocacy. Together, they explore the impact of inflammatory bowel disease beyond the gut, the importance of medication coverage, and the work behind patient organizations. Gail also offers candid insights into funding, accountability, and what meaningful collaboration requires to build better, more individualized care. Episode Highlights 02:25 — Why healthcare cannot be one size fits all: Gail’s red-stiletto analogy illustrates why policies must reflect different patient needs.03:22 — Three decades of advocacy: Gail introduces the two organizations she leads and explains the origins of the Gastrointestinal Society.04:19 — When lived experience becomes a calling: Her mother’s experience with Crohn’s disease—and the blame she faced—helped shape Gail’s advocacy.08:01 — New hope in IBD treatment: Moving beyond symptom management toward therapies that can change the course of disease.09:00 — Trusted education and medical collaboration: How gastroenterologists help review patient resources and support advocacy.10:20 — IBD beyond the gut: Exploring mental health, the gut–brain connection, and the broader burden of chronic illness.11:48 — Medication approval versus coverage: Why an available treatment may still be out of reach for the person who needs it.12:18 — Why patient organizations matter: Helping people navigate healthcare, access reliable information, and evaluate an organization’s credibility.19:11 — Ethics and independence: Gail discusses fundraising boundaries and her organizations’ approach to product endorsements.22:53 — Making patient voices part of drug reviews: Gail reflects on advocating for patient-group submissions to the Common Drug Review.25:41 — Care that recognizes individual needs: Why treatment coverage must account for differences between patients.28:05 — Behind the scenes of collaboration: Funding pressures, unequal workloads, and fair compensation.31:09 — Supporting patients in everyday life: Employer education and free resources bring digestive-health information into workplaces and communities.36:57 — Advocacy in action: Helping connect a patient needing an intestinal transplant with political support.39:47 — What authentic collaboration requires: Respect, addressing harmful behaviour, and returning to a shared mission.Links and Resources Connect with Gail Attara on LinkedInGastrointestinal Society and Canadian Society of Intestinal ResearchGI Society Programs and ServicesPatient Voice Partners — Learn More or Join Patient Voice ConnectAbout Gail Attara Gail Attara is Chief Executive Officer and Co-Founder of the Gastrointestinal Society and President of the Canadian Society of Intestinal Research. With three decades of leadership in patient advocacy, she champions trusted digestive-health education, patient involvement in healthcare decisions, and better access to appropriate treatment. Her family’s experience with chronic illness helped shape her commitment to keeping patients at the centre of care. Disclaimer: The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates. 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.

  2. Sep 25

    When Pregnancy Suddenly Becomes Life-Threatening: Bonnie’s Story of HELLP Syndrome

    Pregnancy complications can affect a woman’s health long after delivery—but those connections are not always recognized. In this episode of Amplify, Ursula Mann and Anne-Marie Hayes speak with Bonnie about her experience with HELLP syndrome, a rare and potentially life-threatening pregnancy complication involving the blood and liver. At 36 weeks pregnant, Bonnie developed high blood pressure, a severe headache, and vomiting, leading to an urgent induction and the early delivery of her first child. At the time, Bonnie believed that delivering her baby marked the end of the danger. Years later, however, she experienced a major cardiac event and was diagnosed with atrial flutter. Despite her continuing symptoms, traditional cardiac tests and risk assessments repeatedly classified her as low risk. Bonnie shares how she eventually learned about the connection between hypertensive disorders of pregnancy and an increased risk of cardiovascular problems later in life. She discusses the relief of finally having her experience validated, the importance of including pregnancy history in cardiovascular assessments, and the difficulties patients face when their symptoms do not fit established clinical models. Through her advocacy and collaboration with healthcare researchers, Bonnie is helping bring the patient perspective into medical education, research, and conversations about women’s heart health. She also offers practical advice for communicating with healthcare professionals, preparing for medical appointments, and remaining “stable but alert” when managing long-term health risks. Episode Highlights with Timestamps 09:49 – Understanding HELLP syndrome Ursula explains what HELLP stands for, its relationship to preeclampsia, and why it can become a medical emergency for both mother and baby. 12:39 – When Bonnie realized something was wrong Bonnie describes feeling unusually tired, heavy, and unwell before her 36-week prenatal appointment. 14:21 – An urgent and unexpected delivery After developing a severe headache and vomiting, Bonnie was admitted to the hospital and induced before she had even packed a hospital bag or attended prenatal classes. 17:25 – Navigating subsequent pregnancies Bonnie discusses the closer monitoring she received during her second and third pregnancies, as well as complications that were not initially connected to her history of HELLP syndrome. 20:40 – Why delivery may not be the end of the story Bonnie explains what she later learned about the potential long-term effects of hypertensive pregnancy disorders on cardiovascular health. 23:26 – The missing question in cardiovascular care Bonnie shares why healthcare professionals should ask women presenting with cardiovascular symptoms about their pregnancy history. 27:18 – Bringing the patient voice into cardiology education Bonnie reflects on participating in cardiology rounds and helping medical professionals understand how standard risk assessments can overlook pregnancy-related risk factors. 30:15 – Becoming “stable but alert” Bonnie explains how she manages her health through regular medical follow-ups, blood-pressure monitoring, medication adherence, and awareness of changes in her body. 37:49 – A message for expectant mothers Her practical advice is simple but important: attend every prenatal appointment, complete recommended blood work, and do not delay seeking care when something feels wrong. 38:14 – Giving women permission to care for themselves Bonnie encourages families and loved ones to help mothers make space for rest, movement, stress management, and their own healthcare needs. 40:30 – Practical tools for patient self-advocacy From writing down symptoms to carrying a card with essential medical information, Bonnie shares ways patients can communicate more clearly during stressful medical appointments. 49:23 – A major cardiac event years later Bonnie recounts waking with an unusual sensation in her chest, initially dismissing it, and eventually learning in the emergency department that she was experiencing atrial flutter. 51:19 – When the tests say everything is fine—but the patient is not Despite experiencing a serious cardiac event, Bonnie’s traditional assessments continued to categorize her as low risk, leaving her frightened and searching for answers. 53:41 – Finally finding the missing connection Bonnie describes the relief of meeting a physician who recognized that her cardiac problems could be connected to her pregnancy complications years earlier. 55:34 – Why reassurance is not always enough Bonnie explains the fear and uncertainty patients experience when standard tests are normal but severe symptoms continue—and why clear communication about what to do next matters. Disclaimer:  The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates. 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.

  3. Sep 11

    20 Years in the Fight: Kathy Barnard on Melanoma, Advocacy, and Innovation

    Episode Summary When Kathleen “Kathy” Barnard noticed two small spots on her arm, she had no idea they would lead to a diagnosis of metastatic malignant melanoma—and a prognosis of just three to six months. In this episode of Amplify, Kathy shares the extraordinary story of how persistence, family advocacy, compassionate-access treatment, and emerging immuno-oncology gave her another chance at life. She also speaks candidly about the gaps she encountered throughout her journey, from an initially dismissed concern and missing medical records to financial barriers and unequal access to treatment. Those experiences became the foundation for the Save Your Skin Foundation, a patient-led organization that has spent 20 years supporting people affected by melanoma and other skin cancers while advocating for prevention, research, clinical trials, innovative treatments, and more equitable cancer care across Canada. Kathy’s story is a powerful reminder that lived experience can expose weaknesses in healthcare—and become a driving force for meaningful change. Episode Highlights Episode Highlights00:33 — Why melanoma deserves greater attention02:44 — The early signs that started Kathy’s journey04:44 — Receiving a metastatic malignant melanoma diagnosis08:04 — How healthcare gaps revealed the need for patient advocacy09:30 — Treatment, difficult side effects, and the team that inspired her11:21 — Learning the cancer had spread and facing a three-to-six-month prognosis12:19 — How Kathy’s son helped find another treatment option14:13 — The remarkable response to an innovative treatment17:02 — Kathy’s advice for patients and families facing cancer19:50 — The beginnings of the Save Your Skin Foundation20:48 — Immuno-oncology and the fight for treatment access23:39 — How patients can become advocates for themselves and others26:58 — Prevention, collaboration, and the All.Can initiative33:29 — Why cancer research and treatment access must be equitable across Canada36:19 — Life beyond cancer: pickleball, travel, and connecting with patientsLinks and Resources Save Your Skin Foundation — Patient support, education, prevention, advocacy, and resources for melanoma, non-melanoma skin cancers, and ocular melanomaAll.Can International — A global initiative working toward sustainable, efficient, and patient-centred cancer careMelanoma Canada — Information and support services for people affected by melanoma and skin cancerCanadian Cancer Society: Melanoma — Information about melanoma, risk factors, signs, diagnosis, and treatmentGovernment of Canada: Skin Cancer — Skin cancer information and prevention guidanceDisclaimer: The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates. 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.

  4. Jul 17

    When Caring for Patients Comes at a Cost: The Complex Reality of Chronic Hand Eczema

    This episode is part of Amplify’s special three-part series on Chronic Hand Eczema, sponsored by LEO Pharma Canada.  Across this series, we’ve explored Chronic Hand Eczema through three deeply connected perspectives: the lived experience of patients, the professional realities of healthcare workers, and the clinical understanding of a condition that is often underestimated.  In the first episode, Amy Wright shared what it is like to live with Chronic Hand Eczema — how painful, visible symptoms can affect everyday routines, family life, confidence, and emotional well-being. Her story reminded us that behind every diagnosis is a person navigating moments that others may not always see.  In the second episode, Marley Gregorio brought forward the healthcare worker perspective, highlighting how Chronic Hand Eczema can affect nurses and care providers whose hands are central to their work. From repeated handwashing and glove use to the emotional burden of struggling with symptoms while caring for others, her episode showed how this condition can become a serious workplace and quality-of-life issue.  In this final episode of the series, Dr. George Christodoulou joins the conversation to connect these experiences to the broader clinical picture. He discusses why Chronic Hand Eczema can be difficult to manage, why early recognition matters, and how the condition can create barriers not only for patients, but also for healthcare professionals who are expected to continue caring for others while managing their own pain and discomfort.  Chronic Hand Eczema is often dismissed as “just a skin condition,” but for many people, it can be painful, persistent, visible, and life-altering. It can affect work, relationships, sleep, mental well-being, social participation, and a person’s ability to feel comfortable in their own skin.  Together, these three episodes highlight the complex reality of Chronic Hand Eczema: it is a patient experience, a healthcare worker issue, a clinical challenge, and an important conversation about awareness, support, and quality of life.  This final episode brings the series together by asking us to look more closely at the impact of Chronic Hand Eczema — especially when caring for patients comes at a cost.  In This Episode, We Discuss:  Why Chronic Hand Eczema can be difficult to manage How symptoms can affect daily life, work, and emotional well-being The added burden for healthcare workers who rely on their hands every day Why early recognition and proper support are important How Chronic Hand Eczema can become a barrier to both receiving and providing care The importance of listening to patient and healthcare worker experiences Why greater awareness is needed to improve understanding and support Episode Highlights  00:03:20 — Why Chronic Hand Eczema is complex to diagnose Dr. George Christodoulou explains why Chronic Hand Eczema can be difficult to identify, with different causes, triggers, and contributing factors.  00:06:28 — Common symptoms patients experience The conversation covers symptoms such as itching, pain, cracking, dryness, flaking, and how these can affect quality of life.  00:09:06 — When everyday actions become painful Dr. Christodoulou shares how cracked and irritated hands can make simple moments — like washing hands, holding food, or shaking someone’s hand — uncomfortable or painful.  00:10:52 — Why treatment is not always simple The episode explores why Chronic Hand Eczema often requires more than one approach, including managing inflammation, repairing the skin barrier, and addressing triggers.  00:14:30 — The impact on work and daily life Dr. Christodoulou discusses how Chronic Hand Eczema can affect a person’s ability to work, especially in jobs that involve frequent handwashing, irritants, or manual labor.  00:20:00 — Access to treatment across Canada Ursula outlines how drug approval and reimbursement pathways can influence whether patients are able to access treatment options.  00:24:53 — How coverage can shape care Dr. Christodoulou shares how insurance and affordability can affect which treatment options are available to patients.  00:29:30 — The long-term burden of chronic disease The conversation looks at how living with a chronic condition over time can affect work, relationships, mental health, and overall life opportunities.    Dr. George Christodoulou is a board-certified dermatologist by the Royal College of Physicians and Surgeons of Canada and the American Board of Dermatology. He obtained his MD and completed his 5-year dermatology residency at McGill University, and then he went on to complete a Mini-MBA in Physician Business Leadership from the Schulich School of Business at York University. Dr. Christodoulou is fluent in English, French, and Greek. He practices general medical and surgical dermatology with an additional interest in cosmetic dermatology and clinical research. He primarily focuses inflammatory disorders, with a significant phototherapy practice, as well as skin cancer screening and treatment.  Links & Resources  Patient Voice Partners  Canadian Association of Neonatal Nurses (CANN) LEO Pharma Canada CHE Nurses Report About This Special Series  This three-part Amplify series on Chronic Hand Eczema brings together the voices of Amy Wright, Marley Gregorio, and Dr. George Christodoulou.  Together, their conversations explore how Chronic Hand Eczema affects people physically, emotionally, professionally, and socially — and why it deserves greater recognition in both patient and healthcare conversations.  This special series is sponsored by LEO Pharma Canada.    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.

  5. Jul 3

    More Than Skin Deep: The Unseen Impact of Chronic Hand Eczema on Nurses at Work

    Sponsor Acknowledgment This episode is sponsored by LEO Pharma. LEO Pharma is a global research-based pharmaceutical company dedicated to advancing the standard of care for people living with skin conditions, their families, and society. Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and its guests. We thank LEO Pharma for supporting conversations that elevate patient experiences and increase awareness of chronic skin conditions. Episode Summary Living with Chronic Hand Eczema is about far more than dry or irritated skin. For many people, it affects their work, sleep, confidence, relationships, and overall quality of life. In this episode of Amplify, hosts Ursula Mann and Anne Marie speak with Marley Gregorio, critical care nurse, nursing researcher, and Vice President of the Canadian Association of Critical Care Nurses (CACCN), about the often-overlooked realities of Chronic Hand Eczema among healthcare professionals. Marley shares insights from national nursing research highlighting the significant burden Chronic Hand Eczema places on healthcare workers. The conversation explores the physical pain of repeated hand washing, the emotional toll of stigma and embarrassment, barriers to diagnosis and treatment, and the difficult decisions some nurses face when symptoms impact their ability to work. The discussion also highlights the importance of empathy, awareness, and understanding different lived experiences. Many people living with Chronic Hand Eczema feel isolated, but as Marley reminds us, they are not alone. Through advocacy, education, and continued research, there is hope for better recognition, better support, and better outcomes. In this episode, you'll learn: Why healthcare workers face a higher risk of Chronic Hand EczemaThe hidden impact of Chronic Hand Eczema on daily life, mental health, and self-confidenceHow stigma and assumptions can affect people living with visible skin conditionsWhy early diagnosis, education, and workplace support matterThe importance of listening to different perspectives and lived experiencesHow advocacy and research are helping drive change across healthcare systemsWhy hope, community, and awareness are essential for improving careIf you or someone you know is living with Chronic Hand Eczema, this conversation is a reminder that support exists, your experiences matter, and you are not alone. This episode is sponsored by LEO Pharma. Links & Resources  Patient Voice PartnersCanadian Association of Neonatal Nurses (CANN)LEO PharmaCHE Nurses ReportMarley Gregorio Marley is a critical care nurse who works in a large acute care and academic hospital in Southwestern Ontario. She also is the Vice President of the Canadian Association of Critical Care Nurses (CACCN) and a first year PhD student in Nursing at the University of Ottawa. She is passionate about education, research and advocacy within nursing. 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.

  6. Jun 19

    Chronic Hand Eczema: A Nurse’s Story of Pain, Work, and Family

    Sponsor Acknowledgment  This episode is sponsored by LEO Pharma. LEO Pharma is a global research-based pharmaceutical company dedicated to advancing the standard of care for people living with skin conditions, their families, and society. Sponsorship helps support the Amplify podcast, but the conversation, perspectives, and final content are produced independently by Patient Voice Partners and its guests. We thank LEO Pharma for supporting conversations that elevate patient experiences and increase awareness of chronic skin conditions.   Episode Summary  What happens when the very hands you rely on for work, caregiving, and everyday life become a source of pain?  In this episode of Amplify, Amy Wright shares her personal journey living with chronic hand eczema while working as a neonatal nurse practitioner and raising two young children. Amy opens up about the physical discomfort, emotional impact, workplace challenges, and advocacy efforts surrounding this often misunderstood condition.  From delayed diagnosis and painful flare-ups to navigating triggers and advocating for safer workplace products, Amy offers an honest look at the realities of living with chronic hand eczema and why greater awareness, prevention, and support are urgently needed.    Episode Highlights  03:23 – Amy shares when she first noticed something was wrong and how her symptoms began during an international trip.  05:13 – How the pandemic dramatically worsened her condition through constant handwashing and disinfectant exposure.  08:34 – The long road to diagnosis and the frustration of limited treatment options.  10:22 – What Amy learned from patient communities that she didn't learn in the healthcare system.  14:28 – The physical symptoms of chronic hand eczema—and why it's much more than "just dry skin."  16:20 – The emotional impact of visible skin conditions, including embarrassment, stigma, and everyday interactions.  17:37 – A mother's perspective: when chronic hand eczema affects the simple act of touching your children.  20:22 – How everyday products, from soap to shampoo, can become unexpected challenges.  24:15 – The reality of managing chronic hand eczema while raising young children.  28:25 – What coworkers, employers, and healthcare organizations can do to better support those living with the condition.  31:24 – Amy discusses advocacy efforts aimed at improving workplace safety and awareness.  35:29 – The hidden economic burden of chronic hand eczema on individuals and healthcare systems.  38:40 – Amy shares what she's most looking forward to outside of work and advocacy.    Links & Resources  Patient Voice Partners https://patientvoicepartners.com/ LEO Pharma https://www.leo-pharma.ca/en-caCanadian Association of Neonatal Nurses (CANN) https://cann.ca/ CHE Nurses' Report https://caccn.ca/wp-content/uploads/2025/05/2025-04-Final-SDEL2406_CHE-Nurses-Survey-Whitepaper_612x792_EN_S04.pdf Dr. Amy Wright, RN, PhD, NP-Pediatrics, NCC-BC, is a distinguished leader in neonatal nursing and an acclaimed researcher dedicated to advancing health equity and cultural safety. As an Assistant Professor at the Lawrence Bloomberg Faculty of Nursing, University of Toronto, she bridges the gap between high-level academia and frontline clinical excellence.  Dr. Wright’s program of research, funded by the CIHR and SSHRC, focuses on the experiences and needs of Indigenous parents with young children. Her work is deeply rooted in community-engaged approaches, advocating for Trauma- and Violence-Informed Care (TVIC) and the elimination of structural barriers within the healthcare system. Clinically, she maintains an active practice as a Neonatal Nurse Practitioner in the NICU at McMaster Children’s Hospital, ensuring her research remains grounded in the realities of patient and family care.  A tireless advocate for the profession, Dr. Wright serves as the President of the Canadian Association of Neonatal Nurses (CANN) . Her contributions have been recognized nationally, including being named one of the "150 Nurses for Canada" by the Canadian Nurses Association, solidifying her reputation as a pivotal voice in neonatal health and advocate for Indigenous cultural safety.   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.

  7. Jun 5

    Beyond Accommodation: Building Workplaces Where Everyone Can Thrive

    Episode Summary What happens when lived experience becomes a catalyst for systemic change? In this episode of Amplify, Ursula Mann and Anne-Marie sit down with accessibility consultant, speaker, entrepreneur, and founder of Accessible Creates, Sydney Elaine Butler. Sydney shares her personal journey growing up as an autistic, biracial woman navigating healthcare, education, and the workplace while learning to advocate for herself in systems that were not always designed with inclusion in mind. From childhood experiences with speech therapy and physiotherapy to becoming an award-winning HR leader and accessibility advocate, Sydney reflects on how her experiences shaped her passion for creating more inclusive workplaces and human-centered systems. The conversation explores disability, neurodiversity, self-advocacy, racial identity, workplace accommodations, hiring practices, and what organizations can do to move beyond compliance toward true inclusion. This thoughtful discussion offers practical insights for employers, leaders, caregivers, and anyone interested in creating environments where people can bring their full selves to work and thrive. Why You Should Listen Learn how lived experience can drive meaningful change in healthcare and workplace systems.Hear Sydney's inspiring journey from childhood speech therapy to becoming a recognized HR leader and speaker.Understand the realities of self-advocacy for people navigating disability, neurodiversity, and healthcare systems.Discover common gaps between organizational intentions and truly inclusive workplace practices.Gain practical strategies for improving accessibility, accommodations, recruitment, and employee engagement.Explore how flexibility and psychological safety can unlock innovation and better outcomes for everyone.Episode Highlights 02:52 – Sydney shares her early experiences with autism, speech therapy, physiotherapy, and navigating healthcare as a child.04:30 – Lessons in self-advocacy from her mother and how those skills shaped her life and career.05:58 – What Sydney wishes someone had told her during difficult moments growing up.07:08 – Reflecting on progress, resilience, and the powerful "love letter" she would write to her younger self.08:30 – From speech therapy challenges to presenting on stage at the Canadian HR Awards.09:54 – How a passion for helping people led Sydney into a career in Human Resources.11:24 – Navigating healthcare as a biracial woman and the importance of being heard.12:23 – A simple but meaningful lesson in self-advocacy during a medical procedure.13:52 – Why "being louder" often means persistently ensuring your voice is heard.15:20 – The impact of racial bias and assumptions in healthcare settings.17:28 – Why patient voices matter and how collective advocacy creates change.17:58 – Advice for parents on teaching children to advocate for themselves.20:23 – Understanding autism, neurodiversity, masking, and self-acceptance.24:09 – The gap between organizational intentions and truly inclusive workplaces.26:06 – Why accessibility legislation is only the beginning, not the destination.27:34 – The importance of standardizing inclusive practices across organizations.28:30 – How diverse ways of thinking create opportunities for innovation.29:00 – Rethinking accommodations and supporting people through changing needs.30:57 – Practical steps organizations can take to better listen to employees.32:22 – Why employee silence is not always a sign that everything is working.33:19 – Embracing mistakes, learning, and building stronger leadership.34:16 – Making hiring and interview processes more accessible and inclusive.37:41 – Sydney shares how she recharges through nature walks and time with her dog, Oreo.Links Accessible Creates: https://www.accessiblecreates.ca/Connect with Sydney Elaine Butler: https://www.linkedin.com/in/sydney-elaine-butler/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.

  8. May 29

    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 changeWhy rare disease communities have led many of the advances in patient-centered healthcareWhat patient experience data is and why it mattersHow advocacy efforts helped shape the 21st Century Cures ActWhy collaboration between patients, advocates, researchers, industry, and regulators is criticalHow individuals can become effective advocates regardless of their backgroundEpisode 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/Learn more about Patient Voice Partners https://patientvoicepartners.com/Connect with Patient Voice Partners on LinkedIn https://www.linkedin.com/company/patient-voice-partners/Listen to more Amplify episodes https://patientvoicepartners.com/podcast/Interested in sharing your story or becoming a guest? 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.

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Amplify brings you real stories and bold conversations — from patients and caregivers to clinicians, advocates, innovators, and system leaders. Together, we explore the human side of healthcare and the bold ideas that make it better. Powered by Patient Voice Partners, this podcast elevates lived experience to shape better care, access, and policy. Tune in to hear what healthcare looks like — when people are finally heard.