Thanks to Velvet Martin who has informed us of Chromosome 18, an organization dedicated to the advocacy of individuals with chromosome 18 abnormalities in an effort to help them “overcome the obstacles they face so they might lead happy, healthy and productive lives.”
More information on the organization can be found at their website. And here’s a video introducing the registry.
Living Archives on Eugenics Blog 
Thank you for sharing. In addition, Tetrasomy 18p Canada is also available to assist those on journeys with diverse medical and advocacy issues to locate kinship and resources: http://www.tetrasomy18p.ca/ “Samantha’s Syndrome”