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Susannah Fox

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Rare Disease

Rebel Health on The Nocturnists

February 13, 2025 By Susannah Fox Leave a Comment

Illustration of a human figure holding a stethoscope. The words The Nocturnists appears at center.

Today is the one-year anniversary of the publication of my book, Rebel Health. To celebrate, I am inviting you to listen to my favorite conversation about why I wrote it and what lessons we can all draw from the patient-led revolution. Emily Silverman, MD, is the host of The Nocturnists. She suggested that I start […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: AA, ACT-UP, Barbara Spindel, Black Panther Party, caregivers, diabetes, Emily Silverman, Hhs, La Leche League, MIT Press, Parkinson's, Pew Research Center, podcast, Rare Disease, rare diseases, Rebel Health, The Nocturnists, Tom Ferguson

Wow! How? Hope for Henry

April 26, 2024 By Susannah Fox Leave a Comment

Cartoons of superhero kids getting medical treatments like an EEG, Central Line Dressing Change, COVID testing, and IV Placement or Blood Draw

Imagine being a little kid and facing not only serious illness, but all the uncomfortable, scary treatments associated with hospitalization: blood draws, IV placements, and scans. Then you find out that you can earn prizes for every medical procedure you go through, thanks to an incentive program called Super Rewards for Super Kids. Kids love […]

Filed Under: Solvers Tagged With: Allen Goldberg, Hope for Henry, Laurie Strongin, Rare Disease, rare diseases, Wow! How? Health

Public Q&A: Rare Disease and Rebel Health

January 19, 2024 By Susannah Fox Leave a Comment

Rebel Health: A field guide to the patient-led revolution in medical care

The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]

Filed Under: Champions, health data, Networkers, peer-to-peer health care, public Q&A, Seekers, Solvers Tagged With: Global Genes, Hhs, Long Covid, MIT Press, Rare Disease, Rebel Health

Transforming research participation

October 18, 2023 By Susannah Fox Leave a Comment

Close up picture of a dandelion

Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]

Filed Under: research issues, Solvers Tagged With: #wearenotwaiting, artificial intelligence, cancer, Chan Zuckerberg Initiative, diabetes, personal science, Rare Disease, rare diseases, Rebel Health, Tania Simoncelli

Whose needs are not met?

September 8, 2021 By Susannah Fox 19 Comments

Questions marks painted on pavement

For years I tried to find ways to explain the particular challenges facing people with undiagnosed and rare health conditions. I decided to create a visualization showing the wide spectrum of people’s health needs and I’d like some feedback on it. Imagine a horizontal line. At the far left side are the people whose needs […]

Filed Under: peer-to-peer health care Tagged With: ALS, Alzheimers, chronic pain, cystic fibrosis, eating disorders, LongCovid, Matthew Trowbridge, ME/CFS, menopause, MIT Press, myalgic encephalomyelitis, peer health innovation, Rare Disease

Chasing cures

February 3, 2020 By Susannah Fox 10 Comments

Decorative: blue gossamer

Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]

Filed Under: health data, Networkers, patient networks, peer-to-peer health care, policy issues, Seekers Tagged With: flip teaching, Health Datapalooza, Rare Disease, rare diseases

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • 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

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