FINDING PURPOSE & JOY THROUGH LIFES CHALLENGING MOMENTS
Support CT Kids is dedicated to supporting children with rare diseases and their families.
We accomplish this by 1) Advocating for systemic change to legislation to ensure rare disease children with significant disabilities have access to state programs to allow them to thrive and 2) Maintaining a database of local and national resources to support rare disease children and their families.
As parents of a rare disease child with a rare neurogentive disease, we struggled to find access to state programs and resources that support rare disease children.
We are committed to shifting this reality for other Connecticut families as they navigate the challenges of caring for a child with a rare disease.
Connecticut is the only state in the Northeast that limits the number of medically fragile children who are eligible to receive critical Medicaid supplemental insurance that would provide essential access to therapies, equipment, and respite care.
We ask for your support in expanding access to the Katie Beckett Waiver Program.
