In this episode of Catalyst Convos, hosts Amy Grover and Carrie Ostrea explore the often-overlooked barriers to care faced by rare disease patients in rural communities. Joining them are Darby Gavin from the National Organization for Rare Disorders (NORD) and Terri Klein, President and CEO of the MPS Society.

Darby shares insights from NORD’s national surveys and the Living Rare Study, revealing the disparities in access, mental health support, and care navigation in rural settings. Terri offers a powerful look into the MPS Society’s boots-on-the-ground work—building trust, respecting cultural differences, and delivering direct support through social workers to families in isolated or underserved regions.

They discuss everything from the digital divide and provider education to transportation barriers and the importance of tailored outreach in communities like the Amish and Cherokee Nation. This conversation highlights practical steps organizations can take, as well as the ongoing need to meet families where they are—geographically and emotionally.

Tune in to hear what’s working, what’s still missing, and how we can all play a part in improving healthcare equity for rare disease patients in rural America.

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Presented by Catalyst Pharmaceuticals
www.CatalystPharma.com

On this episode of Catalyst Convos, host Amy Grover is joined by Laura Romero, a university student living with epilepsy, and Desiree Taliancich, a nurse practitioner diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). Together, they dive deep into the unique healthcare challenges in the Hispanic community and share invaluable advice on self-advocacy, persistence, and the significance of early medical intervention. Laura, who manages her condition with transparency and community engagement, shares her journey of advocating for her health and seeking accommodations in an academic environment. Desiree provides a vivid account of her diagnostic journey, highlighting the difficulties Hispanic patients face in accessing specialized healthcare services, particularly in rural southern Texas. Both guests emphasize the importance of persistence, trusting one’s instincts, and building supportive relationships with healthcare providers. Press play and learn about the unique challenges faced by the Hispanic community regarding rare diseases and epilepsy.

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Presented by Catalyst Pharmaceuticals

www.CatalystPharma.com

Welcome to the inaugural episode of Catalyst Convos! Join hosts Amy Grover and Carrie Ostrea as they embark on an inspiring journey with Rich Daly, the Chief Executive Officer of Catalyst Pharmaceuticals. In this captivating discussion, Rich opens up about his personal battle with epilepsy and the profound impact it has had on his life and career.  Together, they explore the philosophy that fuels Rich’s leadership style and the core values that set Catalyst Pharmaceuticals apart in the industry. Plus, Rich reveals how his personal health challenges have ignited a fierce passion for patient advocacy, driving the company’s mission to transform lives.  So tune in for an insightful conversation that promises to inspire and inform as we uncover how Rich’s unique experiences are shaping the future of patient care at Catalyst Pharmaceuticals. Press play and don’t miss this chance to gain a deeper understanding of what resilience, advocacy, and the unwavering commitment to making a difference in the lives of patients truly means.

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Presented by Catalyst Pharmaceuticals
www.CatalystPharma.com

Welcome to Catalyst Convos, a show that brings you a wide range of conversations relevant to those impacted by rare and difficult-to-treat diseases, including Lambert-Eaton Myasthenic Syndrome (LEMS), Duchenne Muscular Dystrophy, Epilepsy, and Small Cell Lung Cancer. Featuring genuine experiences from community members and expert perspectives, these conversations aim to educate, inspire, and empower listeners.   In each episode, Catalyst Convos offers a personal and authentic exploration of the challenges, triumphs, and life lessons experienced by individuals touched by these conditions. Join us for conversations that celebrate resilience, unite voices, and forge lasting connections within the community.  Welcome to Catalyst Convos: Empowering Stories and Expert Insights - because every story matters, and every voice deserves to be heard. 

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Presented by Catalyst Pharmaceuticals

www.CatalystPharma.com