Rare Disease

It is believed that there are as many as 8,000 rare diseases collectively affecting one in ten people around the world. These diseases are extremely difficult to diagnose, in part because there is little recognition of the symptoms or consensus on diagnostic criteria. For example, some people with rare diseases can go as many as ten years (and some have gone even longer) before getting to a proper diagnosis, only to find that treatments are hard to come by, ineffective, and/or cause debilitating side effects. They also may experience the loneliness and hopelessness that results from a condition that is not widely discussed, and are thus less likely to have a community that provides support or empathy. 

From misophonia to sarcoidosis, the Milken Institute has worked with donors with firsthand experience of rare and difficult to diagnose conditions, bringing experts from multiple sectors and fields together with patients [people with lived experiences] to understand the landscape and work toward better diagnostics and treatments.