2021 Pediatric Palliative Care WebinarsBereaved Parents View on End-of-Life Care

Despite an increase in specialized pediatric palliative care programs there remain inadequacies in end of life (EOL) care for children. This presentation will review the perspectives of 28 Spanish- and English-speaking bereaved parents who detailed qualitative experiences about their children’s end of life care. Parents’ perspectives from the study highlight the importance of 1) supporting …

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ERN-RND – Pelizaeus-Merzbacher disease and related disorders’ by Nicole Wolf

Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker is consultant child neurologist and associate professor at the Emma Children’s Hospital, Amsterdam University Medical Centres, the Netherlands.She is an expert …

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2021 Pediatric Palliative Care WebinarsAlternative Payment Strategies to Enhance Access to Pediatric Palliative Care

With the growing emphasis on value-based payments in healthcare, there is significant potential for enhanced access to pediatric palliative care services. This discussion will highlight the challenges to access of PPC services in traditional reimbursement models, and it will discuss existing state models that have been developed. Finally, a process for exploring policy and legislative …

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Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year’s event will be in person and virtual, on November 20, 2021. Email Julie at runforALD@yahoo.com with questions. Website: www.knockoutald.com

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