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Susannah Fox

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patient networks

A deep dive into food allergy research and education

November 8, 2018 By Susannah Fox 21 Comments

Cartoon: One woman says, "Food allergies are all in your head." Other woman replies, "No, in my head I'm punching you in the face."

Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: food allergy, Rare Disease

Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

Medicine’s cultural “caution tape”

November 6, 2017 By Susannah Fox Leave a Comment

Yellow caution tape against a black background

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes. Jack Penner, in response to “His doctors were stumped. Then he took over” (2017): In terms of how can we empower patient to become active participants, one thing that comes to mind is lowering […]

Filed Under: featured commenters, net-friendly docs, patient networks, social media Tagged With: participatory medicine, Patient Community, peer-to-peer healthcare

Case study: Brain surgery

April 25, 2017 By Susannah Fox 36 Comments

Plastic models of the human brain sit on shelves

We have a “last mile” problem in patient communities. In the first post of this series, I asked for general advice about finding your people — the peers who could give you advice about your health condition and answer even your most secret questions. Now I’d like to focus on how someone would approach getting […]

Filed Under: patient networks, peer-to-peer health care Tagged With: Brain Tumor, case study, peer-to-peer healthcare, surgery

“His doctors were stumped. Then he took over.”

February 5, 2017 By Susannah Fox Leave a Comment

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]

Filed Under: hc's problem list, key people, participatory research, patient networks, peer-to-peer health care Tagged With: C3N Project, patientslikeme, peer-to-peer healthcare, Rare Disease, Smart Patients

How my food-allergy community “flips the clinic”

May 11, 2015 By Susannah Fox Leave a Comment

May 10-16, 2015, is Food Allergy Awareness Week. I am grateful to the women (and a few men) who help me care for my child with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources.

Filed Under: e-patient stories, patient networks, peer-to-peer health care Tagged With: food allergy, Stanford Medicine X

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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