Meet the Rare Family Who Account for 10% of All Cases of Jansen’s

Meet the Rare Family Who Account for 10% of All Cases of Jansen’s

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.

SERVANT LEADERSHIP AND COLLABORATIVE PATHWAYS TO CURES

SERVANT LEADERSHIP AND COLLABORATIVE PATHWAYS TO CURES

The principles of servant leadership can guide visionary leaders to consider all facets: service to the community, patient care, and relationships built on respect and compassion. The rare disease leader’s supportive direction and vision maintains the unity and common purpose of the rare community. This organizational approach engages the community and promotes thoughtful insight and opportunities for establishing compassionate collaborative partnerships in all settings. It reminds us of the work that together we set out to do: bring cures to those who need it.

Why Inclusion and Accessibility Matters When Planning Events

Why Inclusion and Accessibility Matters When Planning Events

The plethora of rare-disease specific events does require an accessible venue, an investment in-staff training to provide an appropriate level of customer service, and networks within the rare disease space and for-profit sectors to capitalize on the potential opportunities rare disease patients bring to a conference as respected partners and collaborators of new drugs.