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Susannah Fox

I help people navigate health and technology.

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Rare Disease

What health care can learn from Mike Mulligan and his steam shovel

February 13, 2015 By Susannah Fox 8 Comments

Google is upgrading health search…again. In 2010, I was inspired by Animal Farm to write that Google saw some health sites as more equal than others. This time I turned to Mike Mulligan and his Steam Shovel, by Virginia Lee Burton.

Filed Under: positive patterns, reforming hc, trends & principles Tagged With: #bcsm, #whatifhc, Apple, cystic fibrosis, Erin Moore, Google, HealthKit, Hugo Campos, IBM Watson, Iodine, multiple sclerosis, patientslikeme, Quantified Self, Rare Disease, Smart Patients, Stanford Medicine X

On celebrating “small wins” and lifting up women and girls

April 25, 2014 By Susannah Fox 4 Comments

Two items stopped me in my tracks this week. Sharing them here on my outboard memory so I don’t forget (and hopefully they will inspire you, too).

Filed Under: key people, positive patterns Tagged With: Rare Disease, Stanford Medicine X

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

“Pursue hope like it’s an outlaw.”

March 17, 2014 By Susannah Fox 3 Comments

Zebras by schinkerj on Flickr

– Afternoon Napper during Rare Disease week in Washington, DC I love that line and that spirit — and this image captured by John Schinker because it looks like these zebras have formed a posse and are heading out on the trail together. When you hear hoofbeats, think “horses” but don’t rule out zebras.* And if you’re […]

Filed Under: beauty and wonder Tagged With: Rare Disease

Extremely rare, incredibly typical

February 28, 2014 By Susannah Fox 5 Comments

After nearly 15 years tracking the cultural shifts happening at the intersection of health and the internet, I know a few things. #1 – don’t get between a parent and a piece of information he or she needs to make a decision about the health of a child. #2 – from 28.8 modems to the latest smartphones, […]

Filed Under: peer-to-peer health care Tagged With: Rare Disease

A field guide to The Diagnosis Difference

November 26, 2013 By Susannah Fox 67 Comments

The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference. Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and […]

Filed Under: demographics, trends & principles Tagged With: california healthcare foundation, cancer, diabetes, epilepsy, fibromyalgia, Heart Conditions, High Blood Pressure, Lung Conditions, Pew Research Center, Rare Disease, rheumatoid arthritis

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Recent Comments

  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45
  • Susannah Fox on Lessons learned about hospice care: “Thank you for sharing!” Jul 30, 12:46

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