Chromosome 9pminus Network

The Chromosome 9pminusNetwork is a 501(c)(3) non-profit, parent-based support group whose mission is to improve the lives of families affected by 9p Deletion Syndrome. We accomplish this by connecting families and increasing knolwedge by proividing information about this rare genetic disorder. 9p Deletion syndrome (aka 9p-, Alfi’s syndrome, or 9p-Syndrome, is a rare genetic anomaly in which a portion of the short (p) end of the 9th chromosome is deleted or missing. The disorder is characterized by varying symptoms and degrees of affliction. The Chromosome 9pminus Network disseminates information to families thorugh yearbooks, newsletters, a Yahoo eGroup, Face Book page and Family Reunions. There is no charge for membership. Currently there are nearly 380 members worldwide, with most based in the US. public.