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Susannah Fox

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rare diseases

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? Patient Memoirs

August 29, 2024 By Susannah Fox 2 Comments

Four books: The Long Haul; Chasing My Cure; AfterShock; Wide Awake and Dreaming

In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS: Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought […]

Filed Under: Champions, key people, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: cancer, David Fajgenbaum, Jessie Gruman, Julie Flygare, Long Covid, Lucy Grealy, ME/CFS, narcolepsy, rare diseases, Ryan Prior, Wow! How? Health

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

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

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

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