Good day to you PatientWorthians! We can't express to you just how excited we are to be attending this year's Rare Disease Day® at the NIH main campus. As laid out…
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…
When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…
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