Most patients with Norrie disease, a rare X-linked genetic disorder, often develop sensorineural hearing loss. But what mechanisms cause this hearing loss to occur? According to Medical XPress, researchers from…
A rare disease diagnosis can change your life; Mari Jackson knows this firsthand. She received a surprise diagnosis of pulmonary arterial hypertension (PAH) at age 48. Her symptoms began suddenly,…
At just 18 weeks old, Ivy Gaines, who was born prematurely, was diagnosed with spina bifida. His parents, Robert and Brittney, have worked tirelessly to ensure that Ivy is receiving…
On September 30, 2021, the National Organization for Rare Disorders (NORD) hosted an educational webinar titled "Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment, and Research." The webinar focused on…
CurePSP has just announced their latest Venture Grant recipients. These grants total $320,000 and will all support the research of neurodegenerative disease treatments. CurePSP gives these grants twice every year.…
The Child Growth Foundation (CGF) is a leading UK charity which supports families, adults, and children with rare growth conditions such as SHOX deficiency, Silver Russell Syndrome, and Sotos syndrome.…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Fenchol, a natural compound, is known for its herbal and appealing scent. This compound is found in a number of plants, including basil, nutmeg, and eucalyptus leaves. In the past,…
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