Aaron Jun - Clara Guides

Mother-Daughter Duo: Navigating Life with SCA

In this episode, Aaron speaks with Laura and Cameryn, a mother and daughter duo, about a rare disease called spinocerebellar ataxia (SCA) and the way it's impacted their lives.

Farber Disease

Inside a family's fight against rare disease

Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.

Researching a new therapy for an ultra-rare disease: A look into the science of Enzyvant with Dr. Alex Solyom, senior medical director

We were lucky enough to have Dr. Alex Solyom join us for the pod. Dr. Solyom is the senior medical director at Enzyvant, where he and the team research a new therapy for an ultra-rare disease called Farber disease.

Patients Have Power

Advocating for Rare Disease in Mississippi

A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

Patients Have Power

Healthcare is on the ballot, with Matt Cortland

Matt Cortland joins Aaron to talk about the upcoming midterm election and what's at stake for patients.

Patients Have Power

Learning to advocate for equitable healthcare: How to make your voice heard

In this episode, we speak with Peter Morley, a self-described "accidental advocate" who, despite living with multiple chronic conditions, fights on behalf of all Americans for fairer healthcare access.

healthcare

The Affordable Care Act: What is at stake

Everything at stake in this latest fight over the Affordable Care Act, from pre-existing condition protections to affordable access, and what patients can do to fight for their care.

Patients Have Power

Cancer Saved My Life

In this episode, I sit down with Michele Rhee, Enzyvant’s Head of Patient Affairs. Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed.

How To Approach Second Opinions

When making a major medical decision, it’s natural to be curious about what different medical teams would recommend. Getting a second opinion is an effective way to make a fully informed decision.

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