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Susannah Fox

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rare diseases

Rare Disease Day

February 28, 2015 By Susannah Fox Leave a Comment

NIH atrium by Jason Levine

Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine.

Filed Under: positive patterns, pt/doc co-care Tagged With: Alpha Geek, Amy Marcus, Francis Collins, NIH, Rare Disease, rare diseases

The boy with a thorn in his joints (and the mom who turned over every rock)

February 6, 2013 By Susannah Fox 8 Comments

Questions marks painted on pavement

When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: moms, New York Times, peer-to-peer healthcare, Rare Disease, rare diseases

When Patients Band Together: Far From a Disgrace

September 8, 2011 By Susannah Fox 23 Comments

When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how […]

Filed Under: patient networks, pt/doc co-care Tagged With: Advocates, Cardiologist, Mainstream Media, Mayo Clinic, patient groups, Patient Network, Peer To Peer, Rare Disease, rare diseases, Roadblocks, Ron Winslow, Scad, Universal Health Care, Using Social Networks, Virtual Registry, Wall Street Journal

Alpha Geeks in Health Care

July 6, 2011 By Susannah Fox 28 Comments

Here’s how tech guru Tim O’Reilly describes his work: So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises […]

Filed Under: patient networks, trends & principles Tagged With: Alpha Geek, Clinician, health care, Health Information Exchange, Innovators, librarians, Market Opportunities, Public Health, Public Health Workers, Rare Disease, rare diseases, Technology Gaps

Rare Disease Day 2009–Susannah Fox

February 28, 2009 By Susannah Fox 7 Comments

Today is Rare Disease Day 2009. Join us in recognizing the reality of rare disorders and celebrating the beauty in the eyes of children living with rare disease and those who have lost their lives.

Filed Under: general Tagged With: rare diseases

Raise Awareness of the Reality of Rare Disorders–Susannah Fox

February 4, 2009 By Susannah Fox 15 Comments

Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on Feb. 28, 2009, is an opportunity to change that.

Filed Under: patient networks Tagged With: NORD, rare diseases

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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