Currently, no organised study exists on this ultra-rare condition. Nevertheless, previous patient cases are being followed up and new patient cases can be reported to the Institute for Human Genetics and Genomic Medicine, University Hospital RWTH Aachen, Germany, for inclusion in the clinical follow-up. Contact: Miriam Elbracht: mielbracht@ukaachen.de and Florian Kraft: fkraft@ukaachen.de
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