The Center for Special Children cares for families with rare genetic diseases. Their work is focused on the Amish and Mennonite communities, but any family affected by genetic disease is welcome. The deep study of the rare inherited conditions occurring within a specific cultural group represents a new paradigm for diagnosis, study, and treatment of these rare conditions. The Center for Special Children collaborates with research groups and a small number of similar specialized clinics across the country, as well as the University of Wisconsin. It is located within LaFarge Medical Clinic, a busy full spectrum family medicine clinic. The program is uniquely funded primarily by a series of benefit auctions across Wisconsin, organized and run by the Amish and Mennonite communities, with donated funds managed by the VMH Foundation. It serves patients from across the Midwest, with about a quarter of patients from outside Wisconsin. Established in 2015, it now serves over 400 patients and families.
Many of the identified conditions are extremely rare, with less than 100 cases identified across the world. The clinic is currently studying several previously undescribed conditions. In many cases, extensive testing at large medical centers, costing hundreds of thousands of dollars, has resulted in no diagnosis for these families. By developing a deep knowledge of the specific syndromes seen in this population, we have been able to make diagnoses at low cost, allowing culturally sensitive care for this underserved and uninsured population. Lessons learned by this deep study, and the care provided, are applicable for patients from communities across the world.