Patient Organizations in Connection with UPD

Abstract

As demonstrated by the multiple personal case reports, UPD patients and/or parents of UPD carriers may be distressed after receiving the aberrant cytogenetic result. In this situation, they are in need of reliable specialist support. In addition to help from well-informed clinicians, patient support groups may be beneficial. This chapter discusses rare chromosome disorder support groups in general, as well as some chromosome-specific support groups. Other support groups are available but may not be mentioned here; we apologize for those not listed. All links are also available at http://upd-tl.com/upd.html#patinfo.