Two emergency surgeries that began 48 hours after birth, meningitis, and over a month in the intensive care units of three Seattle hospitals prompted Layla Babayev’s desperate parents to enroll…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
During a recent WZDX News interview with Dr. David Bick, HudsonAlpha Faculty Investigator Dr. Bick stated that in Alabama alone, there are approximately four hundred thousand people with rare diseases.…
By Jodee Redmond from In The Cloud Copy Four United States senators have introduced a new law that, if passed, will assist children living with rare disease to receive tests…
At the 2017 Global Genes Advocacy Summit, one of the break-out sessions discusses the drug development process. But it goes beyond this to educate us, the patients, on how imperative…
Patient Worthy is fortunate enough to be at the 2017 Global Genes Rare Patient Advocacy Summit this week. While the personal stories that have been shared are highlights of the…
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