On this episode of Catalyst Convos, hosts Amy Grover and Carrie Ostrea are joined by two rare disease caregivers, Mark and Bill, who open up about their journeys as fathers, husbands, and unwavering supporters of their families. Mark shares his experiences navigating life alongside his wife, who lives with Lambert-Eaton myasthenic syndrome (LEMS), while Bill speaks about raising a son with Duchenne muscular dystrophy (DMD), with both his wife and daughter as manifesting carriers.

They reflect on how caregiving reshaped their identities, how they’ve learned to advocate for their loved ones in the healthcare system, and what it means to create space while still being protective. From wrestling with insurance barriers to redefining masculinity through vulnerability, this is a conversation about showing up in ways that aren’t often talked about and why more dads need a seat at the table.

Tune in to hear a raw, honest, and deeply important perspective from men in caregiving roles within rare disease families.

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In this episode of Catalyst Convos, host Carrie Ostrea speaks with Dr. Maya Doyle and Jessica Campbell about what it really means to support families living with rare and chronic conditions.

Dr. Doyle is a professor of social work at Quinnipiac University, specializing in healthcare, transition of care, and medical trauma. Jessica Campbell is a licensed social worker at Jett Foundation and a parent to a young adult with Duchenne muscular dystrophy. Drawing from their personal and professional experience, they explore why asking for help can feel overwhelming, how social workers can meet families where they are, and what meaningful support truly looks like.

From the emotional weight of caregiving to the system-level barriers patients face, this conversation breaks down misconceptions about what social work is and isn’t. Listeners will also hear about new efforts to train more social workers in the genetics and rare disease space, and how advocacy groups can begin incorporating mental health and social support into their programs.

Whether you're a caregiver, patient, clinician, or advocate, this episode offers thoughtful insights into the human side of care

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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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