Mission: "To serve as a collaborative professional network and community of practice for healthcare professionals interested in advancing rehabilitative principles for people with a serious illness. This organization will advocate for high quality rehabilitation services for this population to optimize quality of life" (APRA, 2023).

Ways to get involved:

• Network with likeminded health professionals.

• Volunteer, apply to be or nominate a guest speaker, teach a continuing education course.

• Contribute to APRA's resource base.

• Join APRA and/or an APRA committee.

Fast Facts:

• APRA was established in 2023 and is currently developing its organization and website. They welcome your expertise and participation, and are actively looking for people interested in getting involved.

• Therapies currently allied through APRA: occupational therapy (OT), physical therapy (PT), and speech and language pathology (SLP).

  • • • Other palliative health professions (e.g., chaplains, aides, nursing, physicians) are also invited to network and get involved; interdisciplinary stakeholders are essential to promoting increased inclusion of rehabilitative specialties in palliative care.

Mission & Vision: "To empower, support, and equip families and providers caring for children with serious illness... Pediatric medical providers feel increased efficacy in delivering family-centered care" (CPN, 2023).

Ways to get involved:

• Advocating for Your Child portal provides families with resources to develop skills in advocacy and collaborating with medical teams.

• Clinician portal provides health professionals access to lived experiences of families of children with serious illness. Registration required.

Fast Facts:

• Education and advocacy are two primary focuses of CPN's work.

• Although CPN does not explicitly provide clinicians with advocacy opportunities, OT practitioners can use CPN's tools to help caregivers advocate for their child.

Key Resources:

• Core Concepts portal guides families in navigating healthcare systems, learning terminology, and understanding key concepts.

• Units portal is a resource library with a variety of guides and informational videos that support parents in advocating for their child.

Mission: "to advocate, with one voice, for policies that ensure the best care for patients and families facing serious illness and the end of life" (HAN, 2023).

Ways to get involved:

• Become a Hospice Advocate to join the HAN grassroots network. 

  • • • Receive updates from HAN with Action Alerts for when your action is needed, as well as resources to keep you informed.

• Legislative Action Center connects you to your elected officials, elections, and media by state, as well as current congressional bills.

  • • • Encouraged to reach out to your members of congress.

• Advocacy Toolkit provides resources for developing relationships with congressional members, how to request local in-district meetings, and other advocacy information.

Fast Facts:

• HAN implements the public policy agendas developed by the National Hospice and Palliative Organization (NHPCO).

• HAN participates in the annual Hospice Action Hill Day in Washington, D.C.

Mission: "We improve the care of people with serious or life-limiting illnesses by convening the field, advocating for equitable policies and improved health outcomes, establishing best practices, and sharing resources" (NCHPC, 2023).

Ways to get involved:

• Advocate to your national organization to join the Coalition as an organizational member. Email: info@nationalcoalitionhpc.org

• Sign up to receive the bi-monthly Coalition Edition and stay up to date with current news and policies affecting end-of-life care.

Fast Facts:

• The Coalition also has a pediatric advocacy branch, the National Pediatric Palliative Care Task Force (PPC), described in more detail below.

• The Coalition publishes the Clinical Practice Guidelines for Quality Palliative Care (currently on its fourth edition), a well-regarded "blueprint for excellence" (NCHPC, 2019).

  • • Most current edition (4th) is available free online.

Mission & Vision: "Equitable access to high-quality pediatric palliative care for everyone... Activate interdisciplinary collaborations and create real-world solutions to continuously improve access to pediatric palliative care" (PPC, 2019).

Ways to get involved:

• Contact your PPC State Champion.

• Access the PPC Trainings, Resources, & Curricula Guide to explore a wide range of opportunities.

• The PPC Task Force asks health professionals to use social media to promote the Task Force's efforts and raise awareness of the unique needs of seriously ill children and their families.

  • • • Twitter: @PedsPCTF

      • Hashtags: #PedsPC #PedPC

Fast Facts:

• The PPC Task Force is part of the National Coalition for Hospice and Palliative Care (NCHPC). It was conceived in 2019 by national pediatric palliative leaders, made possible by a two-year grant fund, and launched officially in 2021.

• The PPC Task Force is interprofessional.

Mission: "to provide ongoing and sustainable resource development, technical assistance, education, and training that supports the Aging and Disability Networks in providing culturally competent services to LGBTQ+ older adults and their caregivers" (SAGE, 2023).

Ways to get involved:

• Become a Volunteer Education Ambassador to participate in speaking opportunities, outreach, and raising awareness of LGBTQ+ again in your communities.

• Apply your non-profit or national governmental organization to be listed as an LGBTQ+ friendly service provider.

  • • • Explore and share existing LGBTQ+ friendly resources by state.

      • Find a SAGECare certified provider.

• Use SAGE's Advocacy Tools.

  • • • End of Life Decisions resources.

Fast Facts:

• "The nation's first and only technical assistance resource center focused on improving the quality of services and supports offered to lesbian, gay, bisexual, and/or transgender older adults, families and caregivers" (SAGE, 2023).

• SAGE has an LGBTQ+ Elder Hotline to support elders who are in crisis, have questions, and/or need information about community support resources.

  • • • Call toll-free: 877-360-5428 (LGBT)

      • 24 hours/7 days a week.

      • English and Spanish (translation available in 180 languages).