DDC Clinic partners with the Amish community to study rare genetic diseases. Our work within this community can have a broad impact as we translate our findings to the general population by increasing the knowledge base, improving diagnosis and treatment, with an eventual hope of aiding in disease prevention.
The Old Order Amish are ideal for genetic research because they are a genetically homogenous people who trace their ancestry back 14 generations to a small group who came from Europe in the mid-1700s. The genetic repetition in the closed Amish community causes its members to be more susceptible to genetic disease.
Most of the disorders that are addressed are not unique to the Amish populations so our work can benefit others in need far beyond the local community.
The Amish are true collaborative partners, working with us to find answers that will ultimately benefit people everywhere; they believe that this is their “gift to the world.”
One example of a disorder that affects the Amish in our local settlement and also exists in the overall population is Cohen syndrome. There are approximately 1000 cases of Cohen syndrome that have been diagnosed world-wide; we see between 20-30 Cohen syndrome patients routinely in the clinic.
From our work with those patients we have published information in scientific journals that can be accessed by physicians, researchers and families of Cohen syndrome patients all over the world. These families now have information that was previously unavailable to them on how best to care for their children.