social media

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases.  Now, on social media, they are writing about it, sharing the desperation and the hurt.  And they are finding each other in [...]

Patient Experience Data and the Role of Social Media

Patient Experience Data and the Role of Social Media (Part 1) The 21st Century Cures Act, passed in December 2016, defined patient experience data as data that: “(1) are collected by any persons (including patients, family members and caregivers of patients, patient advocacy organizations, disease research foundations, researchers, and drug manufacturers); [...]