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Patients and Industry: Starting Our New Life Together in 2023

Patients and Industry: Starting Our New Life Together in 2023

by | Feb 1, 2023

Flash back to my article for the Society for Participatory Medicine last year: Let’s Save the Date and Make Patient Engagement Official in 2022. I’m here to deliver some great news: we tied the knot! By the power vested in clinical research, the FDA now pronounces us...
The Keys to Good Relationships With Your Care Teams

The Keys to Good Relationships With Your Care Teams

by | Aug 23, 2022

Being born with cystic fibrosis, a progressive, genetic lung disease, I have had countless health encounters throughout my life. Through these experiences I have learned the power that lies in self advocating for my health in the clinic setting with my doctors and...
Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

by | Aug 17, 2022

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented  early...
Playing the Waiting Game While Living with a Rare Disease

Playing the Waiting Game While Living with a Rare Disease

by | Mar 1, 2022

In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
Building a Framework for Authentic Patient Centricity

Building a Framework for Authentic Patient Centricity

by | Jan 11, 2022

As a leader in patient advocacy, I am often asked to speak on the topic of patient centricity and patient advocacy from the biotech/pharma perspective. What do we mean by patient centricity or when we say that patients are at the center of what we do or patients are...

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