Chucky Bartolo of Lovin' Malta introduced Jake Vella to the world yesterday. Jake suffers from the rare disease ROHHAD. While he was a regular kid for the first five years of his…
The key to solving ANY problem is knowledge. And so the same goes for raising awareness for those living with any type of illness. The more we know about the…
Sometimes, the race to develop breakthrough treatments for rare and devastating illnesses can feel less like the Indy 500 and more like a game of Curling played by armless sloths.…
We are huge proponents of the 21st Century Cures Act, as it does so much for the rare community. However, there has been an unintended consequence of it's 2016 passing…
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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.
