The 17q12 Patient Registry serves the chromosome 17q12 deletion and duplication syndromes community. This is a free platform where you can share your journey. Join now!
We are pleased to announce the launch of the 17q12 Patient Registry! The 17q12 Patient Registry creates a platform for patients around the world to strengthen their voices and share information about chromosome 17q12 deletion and duplication syndromes, that impacts individuals differently; such as, kidney abnormalities, MODY5 (diabetes), neurodevelopmental disorders, seizures, and heart defects. There is currently limited treatment and management guidance available to individuals with chromosome 17q12 deletion or duplication syndrome. Designed with the input of scientists and patients, this global resource will provide data for researchers to use to advance drug development and treatment options to help improve chromosome 17q12 deletion and duplication syndromes patient care.
Join now and let your data tell your story!
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