The Courage to Ask for Help in Rare Disease

Catalyst Convos: Empowering Stories and Expert Insights

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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Presented by Catalyst Pharmaceuticals
www.CatalystPharma.com

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