The # 1 wish parents have for their child is a cure.
Our core belief is recognizing the need to bring together unique services offered by a breadth of providers including pediatric palliative and hospice programs, home health agencies, medical institutions and specialists, therapists, education resources, mental and behavioral health teams, DME suppliers, and nonprofit organizations amongst others.
To fully serve the needs of children with life-limiting conditions and their families, we must consider a comprehensive community approach that includes all relevant support.
We enable the advancement of community-based leaders passionately supporting children with life-limiting conditions and their families.
By providing a collaborative national center for shared learnings, understanding current State solutions, and solving gaps in Federal legislation, more local providers will emerge to serve the needs of our special population.
To champion practical needs to scale, strengthen, and sustain community-based pediatric respite, palliative and hospice home programs around business model optimization, licensing, and reimbursement methods.
To collaborate openly with other associations, coalitions, and organizations sharing a common purpose to enhance the quality of life for children and families recognizing that together we have a stronger voice to improve healthcare delivery systems.
We are committed to the national advancement of pediatric palliative care and respite homes through three main focus areas:
Education & Awareness
We amplify our shared voice raising attention to the unmet needs of the special population of children and families we serve and the solutions being pursued
We actively seek successes, identify gaps, understand opportunities, and help navigate results across the local, state, and federal licensing and regulatory environment
We curate knowledge for community-based pediatric respite, palliative, and hospice home programs, and host the National Advisory Council to aid collaborative priorities and decision making
Live Launch Event
Unite for Medically Fragile
Children in the USA
The Future of Community-based Pediatric Palliative Care Homes
September 21st 2023, 10am PDT
Guest speakers include :
CEO/Founder of NCPPCH, and Co-founder of Ryan House
Kathy Nicholson Hull
Founder of George Mark Children's House