Stichting Rare Care World
General Information
Identification Code: 765106343585-19
Website: [object Object]
Entity Form: Stichting
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 7/17/2021
Last Update: 3/16/2024
EP Accredited Number: 0
Mission & Interests
Goals: At Rare Care World we aim to be an open information resource for individuals with a rare disease, their families and their care providers. They encounter three common problems:
a long way to the diagnosis
need for a multidisciplinary approach
lack of sufficient social care
The website addresses these three domains as identified by the patient organization and/or the caretakers. To facilitate interoperability of data the website also provides diagnostic or care items as described in the process with an international code.
Interests Represented: Does not represent commercial interests
Interests:
- Public health
Levels of Interest:
- global
Activities
Main EU Legislative Proposals: 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: 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).
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: de Kreek4
Post Code: 1231 NN
City: Loosdrecht
Country: NETHERLANDS
Phone: [object Object]
EU Office
Address: de Kreek4
Post Code: 1231 NN
City: Loosdrecht
Country: NETHERLANDS
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 0
Members25 Percent: 2
Members50 Percent: 0
Members75 Percent: 0
Members: 2
Members F T E: 0.5
Info Members: We work as volunteers.
Structure
Structure Type: Structure
Is Member Of: Stichting Rare Care Word collaborates with Stichting Shwachman Syndroom Support Holland https://www.shwachman.nl/ and OSCAR Nederland https://www.oscarnederland.nl/ (patient organisations)
Organisation Members: EURORDIS https://www.eurordis.org/
European Academy of Paediatrics https://www.eapaediatrics.eu/
HL7Netherlands https://www.hl7.nl/