• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Writing
    • greatest hits
    • beauty and wonder
    • demographics
    • featured commenters
    • health data
    • key people
    • peer-to-peer health care
    • positive patterns
    • public Q&A
    • trends & principles
  • Research
    • How Young People Use Digital Media to Manage Their Health
    • Digital Health Practices Among Teens and Young Adults: Key Findings
    • Fact sheet: teens and young adults, social media, online health resources
    • Fact sheet: differences between young women and young men in their use of social media, online health resources
    • Pew Research: Americans’ Data Worries
  • About me
    • Now
    • Curriculum vitae
  • Upcoming events

Rare Disease

“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

Champions of Change

July 10, 2015 By Susannah Fox 8 Comments

Matt Might and Susannah Fox

  Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends. My role at the event was to moderate a discussion with four of the Champions: Amy Gleason, Anish Sebastian, Hugo Campos, and Howard Look. […]

Filed Under: key people, positive patterns Tagged With: Champions of Change, data liberation, Matt Might, Rare Disease, rare diseases

Rare Disease Day

February 28, 2015 By Susannah Fox Leave a Comment

Looking down from the top of the NIH Clinical Center atrium

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

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

  • « Go to Previous Page
  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Go to page 4
  • Go to page 5
  • Go to page 6
  • Go to Next Page »

Before Footer

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Recent Comments

  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37
  • Diane on A survey about clinical trial support groups: “I’d love to hear about clinical trials of the new weight-loss drugs believed to help people with diabetes and pre-diabetes” Mar 8, 12:15
  • Dave deBronkart on Lessons learned about hospice care: “I want to add some things I’ve learned in the years since you posted this. First, it should be noted…” Feb 20, 16:44

Footer

Follow me on Twitter

My Tweets

Topics

  • Beauty and Wonder
  • Demographics
  • Key People
  • Participatory Research
  • Peer-to-Peer Health Care
  • Positive Patterns
  • Public Q&A
  • Trends and Principles

popular posts

  • Hack needed: Tiny pills, trembling hands
  • Caregiving is not a “career break”
  • Sunflowers turn to each other for help
  • Mystery solved. Again.

Explore

Copyright Susannah Fox © 2023 · WordPress · Log in