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Susannah Fox

I help people navigate health and technology.

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e-patient stories

Find your people

January 24, 2015 By Susannah Fox 9 Comments

Look Beyond Face Value: Moebius Syndrome Awareness Day

Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day: When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: Burt Minow, Moebius Syndrome, Nell Minow, peer-to-peer healthcare

Save us, Facebook

November 20, 2014 By Susannah Fox 24 Comments

Erin and Drew

The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way. […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: cystic fibrosis, Erin Moore, Facebook, Inspire, mitochondrial disease, patientslikeme, Smart Patients

20 minutes

May 13, 2014 By Susannah Fox 6 Comments

Grapefruit with telltale circle of an Epi-pen injection site

Food Allergy Awareness Week is May 11-17. I decided to honor it by writing my first public post about being a food-allergy mom. Wendy Sue Swanson, MD, aka @SeattleMamaDoc, is generously hosting it on her blog, where I hope it will reach many, many people. I’d love to hear what you think — about being […]

Filed Under: e-patient stories Tagged With: family, food allergy, Wendy Sue Swanson

Every-day magic

March 27, 2014 By Susannah Fox 16 Comments

I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency). Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: Matt Might, peer-to-peer healthcare, Rare Disease

Put down the clipboard and listen

February 7, 2014 By Susannah Fox 7 Comments

Regina Holliday Data Mote

Here are the remarks I prepared for the Feb. 6, 2014, Engage & Empower Me class at Stanford Medical School. It’s a long post, so if you’d prefer to zone out, you can watch the video. In thinking about this class, I thought a good framing question for tonight is: How does change happen? How […]

Filed Under: e-patient stories, net-friendly docs, participatory research, research issues, social media Tagged With: Pete Seeger, Regina Holliday, Stanford Medicine X, The Walking Gallery, Tom Ferguson

Stanford Medicine X: Participatory research

February 7, 2014 By Susannah Fox 3 Comments

Brett Alder and I spoke last night at Stanford Medical School’s Engage & Empower Me class: Today is a travel day for me, back to the East Coast, so any comments posted may wait in the queue — but please let me know what you think! I’ll post more about this event when I’m home, […]

Filed Under: e-patient stories, net-friendly docs, participatory research, research issues, social media Tagged With: Stanford Medicine X

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