Freedom & Hope This event will be a chance for patients and families affected by Krabbe disease and other leukodystrophies to come together for to build community, spread hope, and…
Losing a child has to be one of the most heart-wrenching experiences a family can encounter, yet losing a child when it could have been prevented is even more devastating.…
In Chicago, a panel of lawmakers and parents are fighting back after the loss of children to a rare disease. Shermane Jenkins lost her two-year-old son to the very rare…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
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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.
