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What’s in a (disease) name?

by | Sep 7, 2012

I witnessed an intriguing Twitter conversation between Christy Collins and Greg Biggers about disease names, so I asked Christy to write up her thoughts. It is an honor to host this guest post: By Christy Collins When I started an advocacy and research organization...

The internet’s downsides: tell us your stories

by | Sep 5, 2012

This is a request for help finding people who have had bad experiences with online health resources. Let me first say that the internet is often a positive force in people’s lives. My own organization’s research can paint a rather rosy picture: teens are...

XX in Health: Women Leading Healthcare

by | Jul 30, 2012

Here’s a video that had me at hello — it leads with data, then follows with insights from people I admire: If you’re intrigued, look for other posts about women in healthcare on Twitter by searching for the hashtag #xxinhealth. And for more wisdom...

Health Care Hackers

by | Jul 19, 2012

A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...

Facial Paralysis, Not Personality Paralysis

by | Jul 15, 2012

Anyone who has doubts about including patients’ input in research studies should talk with Kathleen Bogart, PhD. She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome) and acquired (like the often partial facial paralysis...

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