189 - LIVE at Chan Zuckerberg Initiative Rare As One

At the beginning of June we were invited to moderate a panel at the Chan Zuckerberg Initiative Rare as One Annual Meeting in San Diego, CA. Most of the time diagnosis of a rare disease comes out of the blue and includes life altering, and life shortening symptoms.  The effect of which leave familiy members and friends to manage care and figure out how they might solve the problem.  Many times this means starting a nonprotit organization to advance science toward a treatment and cure.  Patients, parents and friends run these organizations with little to no budget or training.  These heroic efforts make slow progress while testing the resolve of their leaders who are constantly operating at the edge of their emotional, and physical capacity. The CZI Rare as One Program provides funding and training to build or expand research networks as well as increase organizational infrastructure to support this important work. The program started in 2019 and this was the first in person meeting of the 50 grantee organizations that make up the Rare as One Network.  It was an emotional time as the grantees continued to learn and laugh together in 3D instead of through a screen. We had the opportunity to moderate the closing session to talk about the incredible progress to date and the future of the program with three leaders of Rare as One,  Vice President, Science in Society at CZI, Tania Simoncelli Rare as One Program Manager, Heidi Bjornson-Pennell Rare as One Program Associate, Andra Stratton Enjoy the conversation.