Neena Nizar

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Neena Nizar

Director Patient Advocacy Strategy - Center of Rare Disease

ICON plc

Dr. Nizar serves as Founder and Executive Director of the Jansen’s Foundation. She is a rare disease advocate for ultra-rare skeletal dysplasias. Dr. Nizar has a Doctoral degree in Educational Leadership from Creighton University, Nebraska, is a TEDx speaker, a blogger, a disability and inclusion advocate, and Nebraska’s Mother of The Year, 2018. Dr. Nizar is also a rare disease patient herself and a mother to two boys with Jansen’s Metaphyseal Chondrodysplasia – a rare bone disease that affects less than 30 people worldwide.

Talks About
#strategy #disease

Preferred Locations
#Northamerica

Speaking Engagements

RARE Health Equity Forum 2023

Paid

The RARE Health Equity Forum is an annual gathering that brings together various stakeholders within the rare disease space to address the critical issue of health equity. With a specific focus on marginalized populations within the rare disease community, the event aims to identify and implement strategies that can better serve these underserved a

18-19 September 2023

Healthcare

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Neena Nizar

Director Patient Advocacy Strategy - Center of Rare Disease

Speaking Engagements

RARE Health Equity Forum 2023