Stichting Rare Care World

EU Legislative Interests

The European Health Data Space (EHDS) will be a key pillar of the strong European Health Union and is the first common EU data space in a specific area to emerge from the European strategy for data. March 5th the EHDS was adopted. The EHDS will: empower individuals to take control of their health data and facilitate the exchange of data for the delivery of healthcare across the EU (primary use of data) foster a genuine single market for electronic health record systems provide a consistent, trustworthy, and efficient system for reusing health data for research, innovation, policy-making, and regulatory activities (secondary use of data) https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en Proposal for a regulation - The European Health Data Space COM(2022) 197/2 Article 20 GDPR: Right to data portability " The European Commission is working to provide citizens with access to safe and top quality digital services in health and care. " Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare Convention on the Rights of the Child (UN) Convention on the Rights of Persons with Disabilities (UN) Universal Health Coverage (UN)

Communication Activities

With our patient centered orientation on digital health we contributed to the publication: Rare diseases: ethical challenges in the era of digital health Front. Digit. Health, 09 July 2025 Sec. Human Factors and Digital Health Volume 7 - 2025 | https://doi.org/10.3389/fdgth.2025.1539841 The life experiences of individuals living with a condition, individually or as a group, are underrepresented in the digitalising world. Digital child health: opportunities and obstacles. A joint statement of European Academy of Paediatrics and European Confederation of Primary Care Paediatricians REVIEW article Front. Pediatr. , 22 December 2023 Sec. Children and Health Volume 11 - 2023 | https://doi.org/10.3389/fped.2023.1264829 The advancement of technology and the increasing digitisation of healthcare systems have opened new opportunities to transform the delivery of child health services. The importance of interoperable electronic health data in enhancing healthcare systems and improving child health care is evident. Interoperability ensures seamless data exchange and communication among healthcare entities, providers, institutions, household and systems. Using standardised data formats, coding systems, and terminologies is crucial in achieving interoperability and overcoming the barriers of different systems, formats, and locations. Paediatricians and other child health stakeholders can effectively address data structure, coding, and terminology inconsistencies by promoting interoperability and improving data quality and accuracy of children and youth, according to guidelines of the World Health Organisation. Universal Health Coverage leave no child behind: Introduction Multiple stakeholders are involved in achieving Universal Health Coverage (UHC) as part of the Sustainable Development Goals (SDG). The estimated more than 90 million children with disabilities are among the most vulnerable members of the world’s population. Paediatricians around the world have united to promote a world where all children, regardless of their abilities or disabilities, can enjoy a healthy life and well-being. We examined: “What would be the least paediatricians could do to contribute to the UHC?”. Conclusions The economic gap in diagnostic and therapeutic facilities in paediatric practice should be considered in achieving UHC. An international paediatric network should support achieving the UHC by providing adequate paediatric training and quality (digital) information. https://www.termedia.pl/Universal-Health-Coverage-Leave-No-Child-Behind-,127,43665,0,1.html Nederlands Project : De taal van het sociaal model waarin elk individu zich vertegenwoordigd weet; The social language for everyone, implementation of the ICF in personal health records 1-1-2023 - 1-10-2023 Nederlands Project : Een PGO voor Iedereen (2021) MedMij and the “PGO for everyone” project: The Netherlands has a national effort, MedMij, to provide all Dutch citizens with a personal healthcare environment, web or mobile. However, persons with rare diseases have trouble seeing their condition properly represented. Due to the rare nature of their condition, vendors are hesitant to invest in small populations. Having a machine-readable Rare Condition profile would enable vendors to simply read the necessary data to provide those persons with customized dashboards, graphs and questionnaires to address their conditions properly. Moreover, healthcare professionals, patient organizations and researchers could all benefit from the structured collection of data. The “PGO for everyone” project aims to provide a machine-readable API for PGOs. The definitions for specific rare conditions are published as FHIR resources. PGOs can pull those in with an API, and use the definitions to provide disease-specific dashboards and questionnaires for those rare conditions.http://fhir.rarecare.world/ At different congresses, we presented on the use of the Internationale Classification Functioning (ICF).

Interests Represented

Does not represent commercial interests

Member Of

EURORDIS https://www.eurordis.org/ European Academy of Paediatrics https://www.eapaediatrics.eu/ HL7Netherlands https://www.hl7.nl/

Organisation Members

Stichting Rare Care Word collaborates with Stichting Shwachman Syndroom Support Holland https://www.shwachman.nl/ , OSCAR Nederland https://www.oscarnederland.nl/ (patient organisations), en Vereniging van Tietze en costrochondritis patienten