COL4A1 and COL4A1/A2-related disorder: During the close of the second Gene Team meeting, team leadership shared that there was a nonprofit organization (the Gould Syndrome Foundation) designed to help families affected by variants in COL4A1 (as well as the closely related COL4A2 gene) through education, advocacy, and a global patient registry to bring research and medical therapeutic options to those affected (https://gouldsyndromefoundation.org).