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Susannah Fox

I help people navigate health and technology.

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rare diseases

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, patient networks, peer-to-peer health care, policy issues 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

Rare but not alone

March 11, 2019 By Susannah Fox 1 Comment

Between the flags by Nicolas Alejandro on Flickr

Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: Ashley Eakin, Burt Minow, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, rare diseases

Case study: One in a million diagnosis

June 29, 2018 By Susannah Fox 19 Comments

Screen shot of peer health advice video

When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]

Filed Under: peer-to-peer health care Tagged With: case study, EURORDIS, Matt Might, National Organization For Rare Disorders, NIH, Rare Disease, rare diseases

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

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