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

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Blog

Patient Input on Clinical Trials

October 16, 2025 By Susannah Fox 2 Comments

A pipette hovers above a dozen test tubes

According to the World Health Organization, over one million clinical trials are conducted annually across the world. In 2024, the U.S. hosted approximately 20% of all trials, followed by China and India. Imagine all those thousands of patients traveling to clinics, submitting their samples, taking their treatments, and hoping that they – or those who follow […]

Filed Under: Champions, participatory research, policy issues, research issues Tagged With: caregivers, Clinical Trials, Council of Medical Specialty Societies, Innovation Network, Marion Campbell, Patient-Led Research Collaborative, Rebel Health, Stuart Nicholls, Tony Fantana, World Health Organization, Wow! How? Health

Caregiving in America

September 25, 2025 By Susannah Fox 2 Comments

Caregiving is a universal experience cutting across all demographic lines, including political party affiliation

I am thrilled to share results from my collaboration with SSRS and ARCHANGELS, “Caregiving in America: The Common Thread in Every Community.” Here are excerpts from our report: Our nationally representative sample of n=2,012 U.S. adults finds that in the year prior to the survey, 36 percent of Americans provided unpaid care to a family […]

Filed Under: demographics, peer-to-peer health care, trends & principles Tagged With: ARCHANGELS, caregivers, SSRS

Wow! How? Every Cure

September 15, 2025 By Susannah Fox Leave a Comment

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

David Fajgenbaum was in medical school when his body began shutting down. A former college quarterback, he lay in bed, nearly helpless, as a priest read him his last rites. Then a doctor pitched a Hail Mary pass by administering seven different types of chemotherapy, hoping to blast Castleman disease out of Fajgenbaum’s body. It […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: Castleman disease, David Fajgenbaum, Every Cure, Rare Disease, Rebel Health, Wow! How? Health

Wow! How? Community

August 29, 2025 By Susannah Fox 1 Comment

A large group of people of all ages looking up at a camera

Vicki McCarrell had always dreamed of becoming a mother. When she gave birth at age thirty-eight to her son Sean, life seemed complete. Yes, he had the full facial paralysis typical of Moebius syndrome, but otherwise, he looked perfect to her. Indeed, at the hospital near her home in Van Nuys, California, she was given […]

Filed Under: Networkers, Seekers Tagged With: caregivers, Kathleen Bogart, Lori Thomas, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, Rebel Health, Vicki McCarrell, Wow! How? Health

Jill Dopf Viles, DIY scientist

August 15, 2025 By Susannah Fox Leave a Comment

Book cover: Manufacturing My Miracle: One woman's quest to create her personalized gene therapy, by Jill Dopf Viles. Bloomsbury

Jill Dopf Viles suspected a killer was hiding in her family’s genetic code. Symptoms popped up among her siblings, her father, her uncle, her grandmother, but, despite 15 annual visits to the Mayo Clinic, no clinician suggested anything more specific than muscular dystrophy. Viles studied genetics in college and spent hours in the library, reading […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: books I love, Jill Dopf Viles, muscular dystrophy, Rare Disease, rare diseases, Rebel Health, Wow! How? Health

  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Interim pages omitted …
  • Go to page 135
  • Go to Next Page »

Footer

Explore

Don't miss a post

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

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01
  • Rufus on Hack needed: Tiny pills, trembling hands: “How about using a small piece of store bought bread? Slices of bread can be “smooshed,” and a small piece…” Oct 5, 23:48

Copyright Susannah Fox © 2025 · WordPress · Log in