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Susannah Fox

I help people navigate health and technology.

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Hack needed: Peer connection

April 18, 2025 By Susannah Fox Leave a Comment

Close up picture of a dandelion

This post is the latest in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. It starts with a story that long-time readers of this blog will hopefully recognize! Ten years ago this week my friend Delina texted me: I am sweeping the kitchen and just found […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: Allie Signorelli, Delina Pryce McPhaull, Instagram, Katie Couric, Parkinson's, Rebel Health, Wow! How? Health

Wow! How? Patient-Led Research Scorecards

March 27, 2025 By Susannah Fox Leave a Comment

In Dark Times Shine Your Light Brighter

Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]

Filed Under: Champions, Networkers, patient networks, research issues, Solvers Tagged With: Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, Long Covid, Patient-Led Research Collaborative, PCORI, Quantified Self, Rebel Health, Wow! How? Health

Wow! How? “Breaking Brad”

March 6, 2025 By Susannah Fox 2 Comments

A pipette hovers above a dozen test tubes

The latest in my series of stories that hopefully make you say, “Wow! How did they come up with that?” Bradley Burnam loved his job as a medical device sales rep because, as he puts it, he got to play doctor: wear scrubs, visit hospitals, and work with patients. But during one site visit he […]

Filed Under: Champions, Seekers, Solvers Tagged With: Bradley Burnam, Fda, infection control, Rebel Health, Turn Therapeutics, wound care, Wow! How? Health

Rare Disease in the U.S. 2025

February 25, 2025 By Susannah Fox Leave a Comment

Two zebras

Rare disease communities welcomed me as a researcher, inspired me to highlight their ingenuity in my book, Rebel Health, and now I am honored to share results from the first probability-based national survey to measure the rare disease population. I partnered with my former Pew Research colleague Kristen Purcell, now at SSRS, to write the […]

Filed Under: peer-to-peer health care, trends & principles Tagged With: ARCHANGELS, artificial intelligence, ChatGPT, Gemini, peer-to-peer healthcare, Pew Internet, Pew Research Center, Rare Disease, Rebel Health, SSRS, telehealth

The Black Panther Party’s Health Innovations

February 20, 2025 By Susannah Fox Leave a Comment

Cover of the book Body and Soul by Alondra Nelson. Black and white photo of seated people wearing white coats and taking a blood sample from the finger of a child.

Here is the 40th in my series of “Wow! How? Health” stories, also shared on LinkedIn if you want to follow the conversation on that platform. In 1971, the Black Panther Party diagnosed the federal government’s failure to study sickle cell anemia, a genetic disease believed at the time to be found predominately in people […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Alfredo Morabia, Alondra Nelson, Bill Wallace, Black Panther Party, Long Covid, Mary T. Bassett, personal science, Quantified Self, Rare Disease, Rebel Health, sickle cell anemia, Wow! How? Health

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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