SUMMARY: Online patient communities have exploded in the past few years. They’re a great place to find support, information about the most recent treatments, and information about what’s worked for others.
Here’s a curated list from my friend Epatient Dave DeBronkart, the cancer patient and blogger who has become an internationally recognized advocate for patient rights and patient engagement. He blogs over at epatientdave.com, where this resource page for communities begins with some wise words:
“There are many, many more communities than the few listed below. Post them in a comment, and I’ll add them here when I can.
I don’t have the resources to check these out myself.
As with everything you do online, ‘shop wisely.’
“And my advice is: Never assume that any one source is perfect –
no patient community, no book, no web site, no physician, no nothing.
“You are responsible for the information you gather;
check and re-check.”