How One Woman With a Very Rare Disease Secured a Clinical Trial

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.Neena Nizar is one of only 30 people worldwide living with Jansen’s disease, a rare disorder that deforms bones. She is Patient No. 1 in a study at the N.I.H. of a drug that might help.