Pediatric Palliative Care Coalition

RESOURCES - Provides free, downloadable resources to support families & caregivers of children with life-limiting illnesses. These tools are designed to help children live as fully as possible while equipping families with accessible, practical guidance at their fingertips. In 2024, over 6,900 unique visits to our resource pages were received, resulting in 1,400 total downloads. Among the most acccessed materials were the Advocacy Toolkit (3,300 downloads), the Sibling Toolkit (801 downloads) & the Sibling Grief & Bereavement Toolkit (752 downloads). Additional offerings include the Care Plan Book, an organizational guide to help families manage their childs health information, & When a Child Dies, a memorial planning workbook to support families after the loss of a child. All of these toolkits also cover topics such as Self-Advocacy, Caring Conversations & Creative Expressions.

ADVOCACY - committed to ensure that children with serious illnesses have access to high-quality palliative & hospice care. In 2024, this mission was advanced through targeted advocacy efforts that emphasized rural access , provider education, & family empowerment. Participation occurred in 6 national, statewide & regional advocacy coalitions & distributed advocacy resources to over 2,500 families & professionals. Special attention was given to rural communities through ongoing dialogue with stakeholders to address service gaps. Additionally, collaberations occurred with 5 professional associations to raise awareness about pediatric palliative care & promote best practices.