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Susannah Fox

I help people navigate health and technology.

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Rare Disease

Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

Re-imagining care for hospitalized kids

November 8, 2017 By Susannah Fox 9 Comments

On Nov. 1-2, 2017, Hope for Henry convened a diverse group of parents, kids, clinicians, designers, educators, and entrepreneurs to reimagine care for hospitalized kids. I’ll disclose that I am an advisor to Hope for Henry and helped organize the event, but I hope you’ll believe me when I say that it was, objectively, a […]

Filed Under: hc's problem list, key people, positive patterns, Solvers Tagged With: Allen Goldberg, Hope for Henry, Laurie Strongin, Rare Disease

“They come from the same community”

June 13, 2017 By Susannah Fox 3 Comments

Long fingers circling a wrist

I often share links on Twitter, but without the context I’d love to give to each one. A few recent stories of the power of peer connection around health and well-being: Washington Post: Butterfly babies : A rare disease makes these young girls’ skin break and peel at the slightest touch, like a butterfly’s wings As […]

Filed Under: peer-to-peer health care Tagged With: Flickr, India, mental health, npr, peer counseling, Rare Disease, rare diseases, Washington Post, Youtube

“His doctors were stumped. Then he took over.”

February 5, 2017 By Susannah Fox Leave a Comment

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

How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]

Filed Under: hc's problem list, key people, participatory research, patient networks, peer-to-peer health care Tagged With: C3N Project, patientslikeme, peer-to-peer healthcare, Rare Disease, Smart Patients

Champions of Change

July 10, 2015 By Susannah Fox 8 Comments

Matt Might and Susannah Fox

  Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends. My role at the event was to moderate a discussion with four of the Champions: Amy Gleason, Anish Sebastian, Hugo Campos, and Howard Look. […]

Filed Under: key people, positive patterns Tagged With: Champions of Change, data liberation, Matt Might, Rare Disease, rare diseases

Rare Disease Day

February 28, 2015 By Susannah Fox Leave a Comment

NIH atrium by Jason Levine

Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine.

Filed Under: positive patterns, pt/doc co-care Tagged With: Alpha Geek, Amy Marcus, Francis Collins, NIH, Rare Disease, rare diseases

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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
  • 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
  • Susannah Fox on Lessons learned about hospice care: “Thank you for sharing!” Jul 30, 12:46

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