Global Genes: Advocating for Your Child with a Rare Disease at Their School: This toolkit provides several practical strategies for caregivers of children living with rare conditions that can impact their educational experience. Here, we offer several resources intended to help parents, caregivers and professionals understand and advocate for children’s unique needs. Please stay tuned for a highlight of the pediatric palliative care work that will be presented at the conference, including a presentation from our 2022 Trainee Poster Award winner!Ĭhildren with complex medical and developmental needs require additional support and accommodations to meet their medical and learning needs in the educational system. Our leadership team is excitedly planning a productive and fun-filled meeting for our group. SPPAC is quickly approaching, and we are looking forward to seeing you all at our virtual SIG meeting scheduled for Monday, April 4th at 6 pm EST. Weekly Twitter challenges throughout the month engaged SIG members and our interdisciplinary colleagues alike (favorite PPC-related GIF, anyone?)! Through our second annual “Honoring and Remembering: Lessons, Love, and Legacies” forum, SIG members shared impactful patient stories, meaningful personal reflections, and even poems and songs to remind us of the tremendous meaning and power behind the work we all do every day. We also celebrated National Hospice and Palliative Care Month in November with a number of initiatives, new and old. Amanda Thompson and Rachel Kentor, was published this fall ( ). The CPPP Special Issue on Pediatric Palliative Care, End-of-Life, and Bereavement, guest edited by SIG founders Drs. Since our last newsletter, our SIG has been busy tackling initiatives and promoting awareness of pediatric palliative care. If not for colleagues like you all, our loads would be much heavier to bear. We are so proud of all of the members in our SIG. Please know your commitment to our patients and families does not go unnoticed. Others have continued with their lines of research in the midst of numerous barriers. While everyone continues to be faced with personal and professional challenges as we navigate the ongoing pandemic, we are in awe of all of our colleagues in pediatric palliative care who continue to show up, support, and provide unconditional compassion to their patients and families regardless of the personal stressors they are juggling. It seems like time has flown by since we last touched base in our summer newsletter.
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