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Glimmers of Hope: Real Progress In Participatory Medicine

Glimmers of Hope: Real Progress In Participatory Medicine

Twenty-five years ago, I learned I had a large liposarcoma in my left quadricep. I have written elsewhere about my surprise when my surgeon informed me that he and the team had changed the treatment plan. What team? Who are these people? Why wasn’t I at the team...
When a Genetic Counselor Brought Information – and Comfort

When a Genetic Counselor Brought Information – and Comfort

Editor’s note: In her book, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease, Taylor Kane shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen...
Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down

“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
Patients and the Diagnostic Journey: Finding Specialists

Patients and the Diagnostic Journey: Finding Specialists

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...

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