Introduction: The United Nations Sustainable Development Goals #3 “Ensure healthy lives and promote well-being for all ages”. Non-communicable diseases are recognized as a major cause of illness and death globally. In this context, chronic and disabling (rare) conditions are receiving increased attention.
To meet the challenge of sustainable healthcare, cooperation between all involved in child health should be supported. tools to improve health for all. Preventive child health, as well as management of chronic diseases, follow schemes that can be aligned with international semantic terminologies. How can person-centred care, contribute to healthy lives?
Methods: Patient representatives of people with a rare condition designed a Unified Modelling Language (UML), as a graphical language software, to support personal health management: https://rarecare.world. A checklist based on preventive child health schemes was designed to identify recognizable features and diagnostic tests of rare conditions at primary care level. Characteristic symptoms were linked to international terminologies applicable in primary care; the International Classification of Primary Care, Human Phenotype Ontology and Standard for identifying health measurements, observations, and documents. Each symptom was associated with a disease using the International Classification of Diseases.
Results: Rare and disabling conditions present in preventive child health with recognizable features where schemes include data on birth, family history, physical examination, development and growth. For each rare condition, an application programming could be provided to link the features to preventive schemes.
Conclusions: Regardless of the chronic condition, the development of a generic set of skills and tools will allow individuals to manage their own illnesses and improve health outcomes. Different rare conditions have served as examples of a promising model for early recognition and better care of the disabled child.