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Susannah Fox

I help people navigate health and technology.

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National Organization For Rare Disorders

Rebel Health Audiobook

April 9, 2024 By Susannah Fox 2 Comments

Close-up of typewriter keys

I’m very happy to report that the audio version of my book, Rebel Health, is now available from Libro.fm, Chirp, and Audiobooks.com. It is narrated by Kim Niemi, whose voice has been described as “soothing, soulful, and powerful.” I love the samples the publisher chose (click on the links above to play them). Here’s the […]

Filed Under: peer-to-peer health care, Seekers Tagged With: MIT Press, Moebius Syndrome, National Organization For Rare Disorders, Rebel Health

Case study: One in a million diagnosis

June 29, 2018 By Susannah Fox 19 Comments

Screen shot of peer health advice video

When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]

Filed Under: peer-to-peer health care Tagged With: case study, EURORDIS, Matt Might, National Organization For Rare Disorders, NIH, Rare Disease, rare diseases

“Every Mom and Dad of a child with a rare disease has earned an honorary PhD”

March 8, 2013 By Susannah Fox 5 Comments

People in academic regalia, photo by 1yen on Flickr

That’s a line from an essay entitled “cri de cure” by Ethan Perlstein. I tweeted it and got some great replies: Hahaha. I’m often asked by medical teams if I am a MD or nurse. I tell them ‘no,but I have a PhD when it comes to my daughter’ – @SolidFooting Yes! I know more […]

Filed Under: pts as teachers Tagged With: National Organization For Rare Disorders, Rare Disease

Rare Disease Day 2013

February 28, 2013 By Susannah Fox 5 Comments

People living with rare conditions inspire my work every day. A few resources to check out: Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer […]

Filed Under: key people, peer-to-peer health care Tagged With: National Organization For Rare Disorders, Rare Disease, Wendy White

Examples, please: peer-to-peer healthcare

June 27, 2011 By Susannah Fox 83 Comments

I’m writing an article and would love to tap into this community’s knowledge. I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with […]

Filed Under: net-friendly docs, patient networks Tagged With: asthma, Behavior Change, Bonus Points, caregivers, Clinical Practices, Clinicians, Facebook, Health Groups, High Blood Pressure, Macarthur, National Organization For Rare Disorders, Networking Tools, Notoriety, Ob Gyn, Peer To Peer, Population Level, Powerful Resources, Social Networking, Twitter, Weight Watchers, Writ

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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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