Yet for families affected by rare disease and disability, that promise too often collapses at the point of need. Against this backdrop, Connecticut has taken a modest but important step by establishing a permanent Rare Disease Advisory Council within the Department of Public Health. While there is currently no cure for SYNGAP1-related disorders or most rare diseases, scientific progress is not a distant dream. Collectively calling on our state government to strengthen special education, reform disability services, fully staff and fund programs, and invest in rare disease research is a responsibility we all share. If we redirected even a fraction of our attention toward building equitable, functional supports for rare disease and disability communities, we could construct something far more enduring than reports or advisory councils.