Cohen Syndrome Family Gathering
Educational gatherings, such as the Cohen Syndrome Family Gathering, bring together families affected by the same genetic disorder, enabling them to learn about the latest research, talk with medical experts and meet others with the same challenges.
Cohen syndrome is a very rare genetic disorder, affecting fewer than 1,000 people worldwide. With 100 cases of Cohen syndrome in our community and our expertise in treating the disorder, our clinic plays an integral role in the Cohen Syndrome Family Gathering held every two years in Cleveland.
Presented by the Cohen Syndrome Association (CSA), this informative gathering draws attendees from all over the U.S. and around the world. Families have the rare opportunity to meet other families touched by this disorder and learn from Dr. Wang, our clinic’s medical director, and other specialists from prestigious medical institutions. For many families who have traveled great distances, this gathering provides their only chance for an in-person appointment with Dr. Wang.
DDC Clinic organized and presented the first Cohen Syndrome Family Gathering in 2004 as a way to share information with local Amish families affected by this rare disorder. By 2008, with our clinic’s help, a group of parents started the Cohen Syndrome Association to raise awareness and educate parents and medical professionals.
Today, our clinic works in close partnership with CSA on the Cohen Syndrome Family Gathering, providing presenters for the biennial conference, and offering hope, knowledge and support to families around the world.
Understanding Cohen Syndrome
Our clinic has helped to advance global understanding of Cohen syndrome in many ways. Through patient care, collaborations and scientific contributions, we have become recognized as a leading international medical facility for this rare disorder and a trusted resource for parents and physicians seeking information.
Our clinic has seen nearly a hundred patients with Cohen syndrome. By serving these special children and their families – Amish and non-Amish; from the United States, Canada, Europe, Australia and New Zealand – we have learned much and achieved greater understanding.
The scientific contributions we’ve made have been possible through our partnerships, not only with medical teams and research scientists, but more importantly, with the children and families affected by Cohen syndrome.
We’ve shared our knowledge of Cohen syndrome with our fellow medical professionals through scientific publications and online resources for the National Institutes of Health, National Organization for Rare Disorders (NORD), Orphanet, Human Disease Genes, Face2Gene, London Medical Databases Library and GeneReviews.
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