Lighting the way for children with medical complexity
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Legislation Education Advocacy Research Networking
The LEARN Initiative brings together Pennsylvania stakeholders dedicated to improving care for children with serious illness and those receiving palliative, end-of-life and hospice services.
This group includes healthcare providers, medical professionals, therapists, clergy, caregivers, parents, and others committed to advancing pediatric palliative and hospice care throughout Pennsylvania.
Together, we work to enhance support for Pennsylvania children with life-limiting illnesses and their families.
Click HERE for the most recent Pennsylvania Pulse LEARN newsletter.
For more information, contact Krista at krista@ppcc-pa.org.
Pennsylvania Family Care Act - Allows family members to provide critical care and rehab services to elderly loved ones at home, without risking their jobs and financial security.
Pennsylvania POLST Act - Senate Bill 631 provides a legal basis for POLST forms to be used by medical professionals across all health care settings for seriously ill patients who voluntarily wish to specify the treatment they desire to receive.
LEARN Events - Regular virtual LEARN events serve to advance the mission of PPCC with these activities. PPCC welcomes those interested in pediatric palliative and hospice care in Pennsylvania.
PPCC Educational Series - PPCC believes in education that supports the concept and practice of children’s palliative and hospice care by providing seminars and workshops responsive to the educational needs of our community of caregivers, both families and professionals.
POLST Education - Free continuing education course for Physicians, Physician Assistants, Nurse Practitioners, Nurses and other healthcare professionals who are involved with end-of-life care.
Pediatric Palliative Care Coalition (PPCC) wants children who are seriously ill to have access to the life-enhancing service of palliative and hospice care. This means ensuring that providers across the spectrum fully understand the benefits and how to provide palliative care to infants, children and teens by:
PPCC is committed to increasing awareness to advance pediatric palliative and hospice care.
For more information, contact Betsy at betsy@ppcc-pa.org.
The goal of this survey is to create a centralized place for Pennsylvania caregivers and providers to find pediatric palliative and hospice care and related services including family foundations and resources for families using an online map. Click below to access the Resource Survey for Seriously Ill Children in Pennsylvania.
Pennsylvania Resource SurveyPPCC is seeking to virtually connect with Pennsylvania families and caregivers of children with medical complexity who currently use pediatric supportive, palliative or hospice care services or qualify for these services. We are also looking to connect with professionals and clinicians in these fields.
Information gathered in this study supports the development of pediatric supportive, palliative and hospice care programs for children and their families in southwestern Pennsylvania communities, and enhances PPCC’s advocacy efforts throughout the state.
LEARN Initiative Meetings - quarterly Zoom meetings bring together and build community for those supporting children with life-limiting illnesses and those involved with pediatric supportive, palliative and hospice care. All interested Pennsylvania stakeholders are invited to join these statewide collaborative meetings that highlight topics to increase awareness, share expertise and strengthen connections across the field.
To share information about your organization or an important issue at an upcoming LEARN meeting,
contact Krista at krista@ppcc-pa.org.
2026 LEARN Initiative Meetings: Wednesdays at 12pm ET via Zoom
March 25 - Click HERE for the meeting highlights
June 24 - Click HERE for the meeting highlights
September 23 - Meeting highlights coming soon!
December 16 - (please note this is the 3rd Wednesday due to holidays) - Click HERE to register
Caring for a child with medical complexity or other serious, life-limiting illnesses is overwhelming. This can be even more challenging when the child is also living with intellectual or developmental disabilities. Day to day life includes juggling appointments, treatments, medications, household responsibilities, work, and much more in order to meet the needs of the whole family often at the expense of the caregiver’s well-being. Knowing where to begin to find the right resources and finding time to search can feel impossible, leading to feelings of isolation and stress.
The LANTERN Initiative is designed to support parents and caregivers by educating and connecting families to trusted resources and while building a community of support as no one should navigate this alone. If you are managing these challenges, or know someone who is, let the LANTERN Initiative help to light the way.
The LANTERN Initiative is undergoing some exciting changes! Stop back soon! Questions? Please contact Krista Burgbacher, Program Coordinator, at krista@ppcc-pa.org.
LEARN Meeting Highlights from 2024.
Aug 2023 - Meeting Focus: Use of the POLST and Out of Hospital DNRs with pediatric patients and an Environmental Scan aimed at pediatric palliative and hospice care resources in Pennsylvania. Click HERE to view a recording of the meeting. Click on View Here button for highlights from the meeting.
Nov 2023 - Meeting Focus: Resources in the "Plain" Communities for children with rare genetic disorders and building bridges between culture and medicine; PA Environmental Scan. Click HERE to view a recording of the meeting. Click on the View Here button for highlights from the meeting.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
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