Online Communities patient communities Patient Experience Rare Disease

The Patient’s Voice: Living with a Rare Disease

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My friends at drew my attention to an article posted on about people’s experience living with rare diseases. The article, “Patients talk about the frustration and loneliness of rare diseases,” shares verbatim responses from individuals who belong to rare disease communities hosted by

For those of us who work in healthcare marketing, sometimes the voice of the patient is too distant; and often there are louder voices with which we contend. I’ve always believed that listening to patients’ first hand accounts of their experiences will make us better communicators and marketers, and make our organizations better healthcare providers.

I strongly recommend you check out this story on If nothing else, it will remind you why what we do is so important, and why we must continually encourage our organizations to get better.

1 comment on “The Patient’s Voice: Living with a Rare Disease

  1. That voices really make you contend and you feel the experience how you are working in healthcare marketing. From better experiences and communications you can take your organization ahead.

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