Health and Neuropsychological Determinants of Adaptation in Rare and Neurodevelopmental Disorders

Rare and orphan diseases represent a major scientific and clinical challenge. Although each condition displays a low prevalence - affecting fewer than 5 in 10,000 individuals - collectively they impact an estimated 5–9% of the global population. Approximately 80% of these disorders are genetic in origin, with nearly three-quarters involving central nervous system impairment that frequently manifests as cognitive, behavioral, and emotional difficulties. Individuals with rare or orphan neurodevelopmental disorders, as well as their families and caregivers, face substantial psychosocial stressors related to diagnosis, uncertainty, treatment demands, and social stigmatization. Despite growing evidence on the neuropsychological mechanisms underlying these disorders, research integrating cognitive, emotional, and health-related factors remains limited. This fragmentation constrains our understanding of how disease mechanisms interact with health behaviors, resilience, and psychological wellbeing across the lifespan.Recent work has begun to highlight shared pathways linking neurological and psychological processes in rare conditions, such as altered cognitive profiles influencing self-care, adherence, and quality of life. Advances in genetic and neuroimaging technologies have improved diagnostic precision, while behavioral and psychosocial interventions have shown promise in mitigating anxiety, depression, and cognitive decline. However, the translation of these findings into interdisciplinary assessment and management frameworks remains insufficient. There is an urgent need to connect neuropsychological findings with health psychology models, exploring the ways in which cognition, emotion, personality, and coping behaviors interact to determine adaptation and functioning in these complex populations. By combining perspectives from neuroscience, psychology, and health sciences, this Research Topic seeks to bridge disciplinary silos and promote integrative, patient-centered frameworks.This Research Topic aims to bring together cutting-edge basic, clinical, and applied research on the neuropsychological and health-related dimensions of rare and neurodevelopmental disorders. It seeks to advance understanding of how cognitive impairment, emotional regulation, social support, and health behaviors contribute to both symptoms and wellbeing. Authors are encouraged to explore the neural, behavioral, and psychosocial determinants of adaptation, and to identify clinical and public health strategies that enhance quality of life, adherence, and resilience in affected individuals. The initiative also intends to stimulate debate on the cultural, ethical, and health-system challenges in diagnosing and treating these conditions, especially in under-resourced contexts. Ultimately, the goal is to create a transdisciplinary space that fosters collaboration among neuropsychologists, health psychologists, clinicians, geneticists, and rehabilitation specialists to improve both scientific insight and patient outcomes.To gather further insights into the nexus of neuropsychological and health processes in rare and neurodevelopmental disorders, we welcome contributions that advance both theoretical and applied perspectives. The scope of this Research Topic encompasses studies of cognition, emotion, health behavior, and adaptation, while excluding manuscripts that do not address central nervous system involvement or psychological correlates. Articles that address, but not limited to, the following themes are welcome:- Psychosocial and health behavior correlates of diagnosis, treatment, and adaptation- Emotional wellbeing, coping mechanisms, and resilience in affected individuals and families- Neurobiological and psychological predictors of quality of life and functional outcomes- Integrated assessment and intervention models combining neuropsychological and health psychology approaches- Cross-cultural and health-system perspectives on patient care and access to neuropsychological services- Technology-assisted or digital tools supporting neuropsychological rehabilitation and health management- Ethical, social, and policy dimensions of care in rare and neurodevelopmental diseasesWe welcome the following article types: Original Research, Review, Systematic Review, Brief Research Report, Case Study, Hypothesis and Theory, and Perspective articles. Topic editors: Carlos Alberto Serrano-Juarez, Belén Prieto-Corona, Adriana Aguayo Arelis Source: https://www.frontiersin.org/research-topics/82228/health-and-neuropsychological-determinants-of-adaptation-in-rare-and-neurodevelopmental-disorders