Located in the world’s fourth largest Amish settlement, our center is an innovative collaboration of our Amish and non-Amish communities, dedicated doctors, and researchers all working together to find answers for parents and treatments for children.
Our long-standing partnership with our Amish community has been vital to our study of rare genetic diseases that affect their population. Throughout the years, our Amish patient families have seen how our research findings have dramatically improved patient care and benefitted the community, both medically and financially, leading to a trustful relationship with our clinic.
The Old Order Amish provide a unique opportunity for genetic research as they’re a genetically homogenous people who trace their ancestry back multiple generations to a small group who came from Europe in the mid-1700s. As a closed community, the Amish have lesser genetic variation than the general population and greater susceptibility to genetic disease.
Our partnership with the Amish has enabled us to study some of the world’s rarest diseases and helped us to better understand disorders such as Cohen syndrome which affects Amish individuals in our community and also the general population. There are approximately 1,000 diagnosed cases of Cohen syndrome throughout the world; we see more than 100 Cohen syndrome patients routinely in our clinic.
Our work with Cohen syndrome patients and our research on the disorder have greatly contributed to our knowledge and understanding, enabling us to share information in scientific journals that can be accessed by physicians, researchers and families of Cohen syndrome patients all over the world.
None of the genetic disorders that we study are exclusive to the Amish, therefore, our work can benefit the general population. Many rare genetic disorders share common biological and metabolic pathways with more common diseases, such as obesity and cardiovascular diseases. We believe that translational research from rare diseases to common health problems can lead to greater knowledge and more effective approaches to addressing broader health issues.
We’re thankful to our Amish community for their willingness to participate in our research efforts. The Amish are true collaborative partners, working with our clinic to find answers that will ultimately benefit people everywhere; they believe that this is their “gift to the world.”
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