Patients with “Orphan Diseases” Find Each Other Using Social Media Online & Jump Start Research

People who have “orphan diseases” (extremely rare diseases) often find that their local MD’s know very little about their disease because they may have never encountered it in their practice.

Some patients are taking matters into their own hands and finding each other online through social media to exchange information, experiences, and even spur researchers to do clinical trials.

Here’s one such success story about a young woman with a rare disease who found 70 other patients with her disease from around the world and inspired an MD (Dr. Sharonne Hayes) at Mayo Clinic to undertake new clinical trials. 

Listen to the story here on NPR Morning Edition: Patients Find Each Other Online to Jump-Start Medical Research.

Some quotes from the story:

“Hayes set up a virtual patient registry and allowed patients from all over the world submit their  medical records and scans online. In the first trial, Mayo enrolled 12 patients — and had to turn people away.

…The rise of social media has allowed patients to do for themselves what researchers like Hayes can’t: spread information about research. Through their personal Facebook pages, chat rooms and message boards, patients are recruiting each other in a kind of virtual word-of-mouth.

“This is not investigator-initiated research, this is patient-initiated research,” Hayes says, “and to  a certain extent has been patient-sustained research in the case of our study.”