Two Disabled Dudes Podcast

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 organizati