Story perspectives

3-Foot-9 Jansen’s Disease Patient Completes NIH Drug Trial

8/18/2026

Summary

Story summary

Neena Nizar, a 3-foot-9-inch woman with Jansen’s disease, completed a 10-week drug trial at the Institutes of Health.
Only 30 people worldwide have Jansen’s disease, including Nizar and her two sons.
Despite chronic pain from deformed bones, she remains energetic and charismatic.
Researchers such as Dr. Matthew Porteus hope the drug could protect child participants, noting there are 6,000-10,000 rare diseases and that developing a treatment costs millions.

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Story summary

Neena Nizar, a 3-foot-9-inch woman with Jansen’s disease, completed a 10-week drug trial at the Institutes of Health.
Only 30 people worldwide have Jansen’s disease, including Nizar and her two sons.
Despite chronic pain from deformed bones, she remains energetic and charismatic.
Researchers such as Dr. Matthew Porteus hope the drug could protect child participants, noting there are 6,000-10,000 rare diseases and that developing a treatment costs millions.