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Susannah Fox

I help people navigate health and technology.

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Rare Disease

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

Chasing cures

September 10, 2019 By Susannah Fox 7 Comments

CHASING MY CURE book cover

Years ago, I met a mom of a child with a rare disease who matter-of-factly shared her story, which included as many twists and close calls as any blockbuster summer movie. I marveled at her heroism and she said no, she rejects that description. “I’m not a hero,” she insisted. “I’m a typical mom. You […]

Filed Under: e-patient stories, key people, positive patterns Tagged With: Abby Norman, Afternoon Napper, Bon Ku, Dana Lewis, David Fajgenbaum, Doug Lindsay, Rare Disease, rare diseases, Sharon Terry, Terry Jo Bichell

A helping hand, just in time

August 26, 2019 By Susannah Fox 5 Comments

D-ABNT by Benedikt Lang on Flickr - cropped

Some years ago a few colleagues and I got stuck at Logan Airport and we started telling stories to pass the time. One tale has come back to me over and over again, particularly as I cared for my dad during his last year of life, because it reminded me to be open to the possibility […]

Filed Under: peer-to-peer health care Tagged With: Francis Collins, NIH, Rare Disease, rare diseases, Sharon Terry

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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
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