I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very, very tiny subsets of the…
When you're competing in an important golf tournament, the last thing you want to worry about is narcolepsy and cataplexy associated with narcolepsy — but those are two very big…
Oh Canada, people think you’re all “please and thank you,” and maple syrup, but I know the truth: You’re a fighter and that fight is most obvious in the Canadian…
CysticLife.org, an online network for the cystic fibrosis (CF) community, is embarking on a historic fundraising effort to support community driven research in CF. With your help, CysticLife and Mayo Clinic…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
