• 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

EURORDIS

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

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 Caregiver Survival Guide: “Great question! When the downhill run toward discharge began for Mitsuru, he had been in the hospital for about 10…” Oct 23, 10:46
  • Dave deBronkart on Caregiver Survival Guide: “As I age and see my lifelong peers start to decline, this brings tears to my eyes. Thank you again.…” Oct 22, 10:17
  • 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

Copyright Susannah Fox © 2025 · WordPress · Log in