Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that herd of horses.”
Kimberly touches on the impact of living with a rare disease, and also what she had to go through to get a diagnosis for her condition. Watch her video to hear what she has to say…
“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally. “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting. And social media is one way of doing that.”
Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.