What is Farber Disease?
As a very rare genetic disease with patients spread out around the world, Farber disease is not always recognized by doctors and is often misdiagnosed as a form of arthritis.
Aaron Jun
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.
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.
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.
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.
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.
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.
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