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Chapter 112self-injurious behavior. These comorbidities are often refractory to standard pharmacological and psychological interventions, and necessitate intensive care. This poses an enormous burden on affected individuals, families, caregivers, and healthcare systems, implying clinical and economic burden as well.10 Because of the lifelong care needs on multiple life domains, these patient populations present significant challenges for care providers when it comes to delivering optimal personalized care. It requires specialized knowledge and expertise from various healthcare professionals, such as physicians, behavioral therapists and psychologists, occupational and speech therapists, dieticians, and direct support staff. RGNDs may involve multiple organ systems, comorbidities and unique treatment approaches. It may impact all life domains covered by the International Classification of Functioning and Disability (ICF) framework of the World Health Organization.11Increasing knowledge about somatic and mental health manifestations in RGNDs and ID has resulted in improved (disorder-specific) preventive interventions and care.12,13 For example, life expectancy has increased from ten years in 1960 to 47 years in 2007 in individuals with Down syndrome due to preventative screening and improved treatments.14Moreover, parkinsonism has increasingly recognized in specific RGNDs with implications for management.15 Also, multisystem manifestations of Tuberous Sclerosis Complex (TSC) vary across age.16 Specifically, new subependymal giant cell astrocytomas (SEGAs), which are characteristic TSC brain lesions, arise frequently during childhood, but very rarely after 25 years of age, for which frequency of performing brain imaging differs between childhood and adulthood.17 Another example includes the often devastating and self-injurious behavior with higher prevalence in several RGNDs compared to idiopathic ID.18 It has also been found that once pathological gastro-esophageal disease in Cornelia de Lange syndrome has been treated, behavioral symptoms significantly improve.19,20Upcoming interventions and treatment optionsAs treatment targets are increasingly identified for many RGNDs21,22and interventional research has gained emerging interest23,24, there is a great need for evidence-based therapeutic interventions at several levels Annelieke Muller sHL.indd 12 14-11-2023 09:07