According to a recent article, a little boy’s parents are bringing awareness to the rare genetic disorder called uncombable hair syndrome after he was diagnosed at just 14 months old.…
It is extremely important to get the right medications into the hands of patients who need them. Recently, the FDA helped do this for pediatric patients (aged 2+) with primary…
On December 9, 2021, the National Organization for Rare Disorders (NORD) hosted a webinar program titled "Health Equity and Rare Disorders." This webinar was the first of a three-part series…
Novartis has recently announced the results of their Phase II BYLieve trial, which is investigating Piqray® (alpelisib) as a treatment for hormone-receptor positive, human epidermal growth factor receptor-2 negative (HR+/HER2-)…
Meniere's disease is a rare inner ear disorder characterized by "attacks" of tinnitus, ear pain, ear pressure, and dizziness. While doctors have long pondered the exact cause of this condition,…
Dr. Deborah M. Stephens from the Huntsman Cancer Institute recently presented at the 39th Annual Chemotherapy Foundation Symposium Innovative Cancer Therapy for Tomorrow (CFS). The presentation surrounded how critical identifying…
According to a recent article, a Vietnam veteran is spreading awareness about the struggles of accessibility for treatments for his rare genetic disease alpha-1 antitrypsin deficiency (A1AD). Alpha-1 Antitrypsin Deficiency…
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