According to Hemophilia News Today, GENV-HEM, an investigational treatment for patients with hemophilia A and B either with or without clotting factor inhibitors, earned Orphan Drug designation from the FDA.…
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…
According to a recent article from MedPage Today, new clinical guidelines involving parathyroidism were previewed at the American Society for Bone and Mineral Research (ASBMR) meeting last month. Hypoparathyroidism Hypoparathyroidism…
Like every other body part, bones are living tissues and go through several rejuvenation cycles throughout life. Older bone tissues are replaced with newly formed bone tissues in a process…
Albert Edge and Yushi Hayashi recently led a research team which uncovered the specific mechanism which can cause deafness in Norrie disease, a rare condition. These findings were recently published…
On October 27, 2021, the National Organization for Rare Disorders (NORD) hosted an informational webinar titled "Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profits." This webinar was the…
Access Opportunities for Rare Disease Patients At present, there are around 7,000 identified rare diseases, with only 5% having treatments. That leaves more than 95% of rare disease patients with…
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