Neena Nizar

Neena Nizar is a patient advocate and the founder and executive director of The Jansen's Foundation, an organization dedicated to advancing treatment for Jansen's metaphyseal chondrodysplasia, an ultra-rare genetic bone disease affecting approximately 30 people worldwide. She serves as Director of Patient Advocacy Strategy at ICON plc's Center of Rare Disease, where she works to integrate patient and caregiver perspectives into drug development and clinical research. Nizar, who has the disease along with her two sons, played a central role in driving research and clinical development of a candidate therapy called PTH-IA, and in 2026 became the first participant in a solo clinical trial at the NIH Clinical Center. She holds a doctorate in education from Creighton University.