There Are Just 30 Known Cases of Jansen’s Metaphyseal Chondrodysplasia Worldwide.
Such is the rarity of Jansen's metaphyseal chondrodysplasia (JMC), the number of letters in its name is greater than the number of known cases worldwide. Neena Nizar and her two sons, Arshaan and Jahan, account for 10% of those cases. Neena is the founder of The Jansen’s Foundation, an organization committed to accelerating research into JMC and the other ~7,000 known rare diseases. With World Rare Disease Day on the horizon, Neena shares her family’s story with us and explains why advocacy work is so important.