‘Mind the Gap’—A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability

Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.