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Expert Advisory Boards: A New Model for Co-Exploration

Expert Advisory Boards: A New Model for Co-Exploration

by | Jan 4, 2023

A few years ago I learned that non-profit organizations MUST have a Scientific or Medical Advisory Board in order to be listed on NIH’s website as an informational resource for patients. Likewise, many foundation grants require a non-profit to have a similar...
Health Literacy Requires Talking with People – Not Patients

Health Literacy Requires Talking with People – Not Patients

by | Dec 14, 2022

“When someone is having an acute situation, that is not a teaching moment.” Peter Pitts  I recently participated on a panel at the STAT Summit with two brilliant healthcare thought leaders, former FDA Associate Commissioner and current president of the Center for...
Patients and the Diagnostic Journey: Finding Specialists

Patients and the Diagnostic Journey: Finding Specialists

by | Sep 7, 2022

The journey to diagnosis for patients, particularly those living with complex health conditions remains challenging for patients, their loved ones, and their physicians. As frontline experts on the diseases and conditions affecting their lives, patients and family...
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...

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