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Susannah Fox

I help people navigate health and technology.

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Rare Disease

Rare Disease Day 2019

February 28, 2019 By Susannah Fox 3 Comments

Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: Rare Disease

A deep dive into food allergy research and education

November 8, 2018 By Susannah Fox 21 Comments

Cartoon: One woman says, "Food allergies are all in your head." Other woman replies, "No, in my head I'm punching you in the face."

Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: food allergy, Rare Disease

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

The Rise of the New Bio-citizen

March 11, 2018 By Susannah Fox 4 Comments

Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]

Filed Under: participatory research, peer-to-peer health care, policy issues, research issues Tagged With: Anna McCollister-Slipp, Eleonore Pauwels, Invent Health, Matt Might, patient activation, peer-to-peer healthcare, Rare Disease, Todd Kuiken, Tracking for Health

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

“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

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