This issue of Advances in Neonatal Care is devoted to rare diseases encountered in the neonatal period. This is an area of specialized care that neonatal providers come across almost daily and the unique characteristics of these infants make them the most perplexing patients. Because of the complexities of caring for these infants, families often require additional support and, even more importantly, need help with developing the important parent-infant relationship. Moreover, for many of these infants and their families the neonatal experience is both “hello” and “goodbye” within the same breathe and these can be difficult experiences for all involved. Unique to this issue are several thought-provoking articles that provide the families’ point of view of the NICU experience as well as the long-term issues of caring for these complex infants. Increasing our understanding of the needs of these complex infants and their families is a growing issue of concern, especially because while some infants may expire quickly, others do not given our growing level of knowledge and technology. Several articles focus on particular rare diseases, while others provide an overview of what a rare disease is and what that means to a family.
Please let us know how you like this special issue related to "rare diseases" and whether you would like to see a different neonatal topic highlighted like this in the future; we would love your feedback.
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