Through sheer determination, Neena Nizar has become the first patient in a clinical trial testing a treatment for her disease — one so rare it affects just 30 people worldwide. This breakthrough offers hope for individuals suffering from Jansen's Metaphyseal Chondrodysplasia (JMC), a rare disorder that deforms bones. The study is being conducted at the National Institutes of Health (NIH), marking a significant step forward in medical research for ultra-rare conditions.