Chrissy Salley, Courageous Parents Network, and Stephanie Meredith, Genetic Support Foundation
January 2026 – March 2027
This project will partner with families, clinical experts, and Parent Advocacy Organizations to illuminate and evaluate the current landscape of family-facing educational materials for trisomy 13 and 18. The team will conduct a resource needs assessment, find existing educational resources, and create a grading rubric to assess existing and future educational resources. Applying this rubric will help determine gaps in family education materials, and the findings will be disseminated with the goal of informing more effective, accessible support for families impacted by trisomy 13 and 18.
