‘Help Us Find Others Like Tess’: Families, Patients With Rare Disorders Unlocking The Power Of Social Media
Patients and their families are turning online to not only find people who share in their diagnosis, but also for help in getting one.
KQED:
Through Social Media, Family Connects To Rare Diagnosis – And Hope
If you are suffering from an illness fewer than a dozen people in the world are known to have, getting a proper diagnosis can start to feel like a hunt for something that doesn’t exist. That’s the position one family found themselves in before they turned to social media in search of an answer, managing to discover in one day an answer that had eluded doctors for years. (Snow, 5/10)