Scotch Plains, NJ Names September 18 as Usher Syndrome Awareness Day
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Scotch Plains, NJ Names September 18 as Usher Syndrome Awareness Day

At Patient Worthy, we love to see patient advocates and the impact that these advocates have on their communities. For example, brothers Ethan and Gavin Morrobel have worked tirelessly as…

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Less Than Half of U.S. States Have a Rare Disease Advisory Council and This Needs to Change
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Less Than Half of U.S. States Have a Rare Disease Advisory Council and This Needs to Change

Guadalupe Hayes-Mota has worked for Biogen, Ultragenyx, Amgen, and GSK. He was the prior UCLA Health Director. Additionally, he is a member of the Massachusetts Rare Disease Advisory Council. He…

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First in-Depth Study Investigates Chronic Hypoparathyroidism in Pregnancy
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First in-Depth Study Investigates Chronic Hypoparathyroidism in Pregnancy

A recent study investigated the experiences of patients with chronic hypoparathyroidism in pregnancy. The study ultimately found that these patients typically had low risk pregnancies and normal outcomes. However, they…

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