Contacts and Resources About Pediatric Palliative Care

The following resources might be helpful for families of children with serious illnesses:

Centre for Pediatric Pain Research
An international internet forum for informal discussion of any topic related to pain in children.

Children’s Hospice and Palliative Care Coalition (CHPCC)
Advocates and initiates change in policies and programs that impact children’s access to community-based health services; collects, develops and shares best practices; initiates research in support of pediatric palliative care; and more.

Courageous Parents Network
The mission of Courageous Parents Network is to empower parents and families of children living with serious illness.

Crescent Cove
Offers care and support to families, builds and operates as the first residential children’s hospice and respite care home in the Midwest, and advocates and raises awareness for families caring for a child with a shortened life-expectancy.

Hospice and Palliative Nurses Association (HPNA)
A US-based nursing organization with web based resources for professionals and families.

The Initiative for Pediatric Palliative Care (IPPC)
Offers a comprehensive website with curricula and resources, including videotapes and other helpful educational resources.

International Association for Hospice & Palliative Care (IAHPC)
Facilitates and supports palliative care training at all levels of healthcare systems; provides guidance and technical assistance with palliative care policy, advocacy, clinical guidelines, and service implementation; fosters palliative care research and evidence-based practice; and facilitates collaboration between hospice and palliative care providers, organizations, institutions and individuals.

National Hospice and Palliative Care Organization (NHPCO) Pediatric Hospice and Palliative Care
Hosts the Children’s Project on Palliative/Hospice Services (ChiPPS) offering NHPCO’s Pediatric Facts and Figures, NHPCO’s Standards of Practice for Pediatric Palliative Care and Hospice, and a free, quarterly e-journal on pediatric palliative/hospice care.

National Institute of Nursing Research (NINR)
Supports and conducts clinical and basic research and research training on health and illness across the lifespan to build the scientific foundation for clinical practice, prevent disease and disability, manage and eliminate symptoms caused by illness, and improve palliative and end-of-life care.

A UK Pediatric Palliative Care Mailing List with a searchable database for health care professional literature.

Pediatric Palliative Care Coalition (PPCC)
A Pennsylvania volunteer group of professionals, parents, and community members who provide information and resources for families with children with life-limiting conditions.

SWAN USA (Syndromes Without a Name)
An initiative run by the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

Together for Short Lives
The leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them.  They support families, professionals and services, including children’s hospices and offer a list-serve, resources, etc.

MNHPC has NOT evaluated, made any determination about quality or efficacy, and does not endorse any information, service, product or company represented by these hyperlinks. The list is not a complete list. Consumers and healthcare professionals should use their own judgments about the quality and necessity of information/products/services available for their own conditions.