Medical home for people with a rare condition
Rare conditions are often a combination of not so rare congenital anomalies and diseases that may manifest at different ages.
Some characteristic features may not be recognized as a specific feature of a rare condition.
Once the diagnosis is established a multidisciplinary collaboration between medical specialist, general care providers close by home and patient and family helps to ease the life of a person with a rare condition and its family.
Here you find documents and reports on activities that may be relevant.
IT coding for information exchange on Medication and Vaccinationapplication/pdf: 769.7 KB
Classifications and Iso standards as a tool for Sustainable Development Goals.application/pdf: 512.4 KB
At the 14th Meeting of the International Conference on Rare Diseases and Drugs (ICORD) 11-13 November, 2019 in Israel, we presented an international model on digital health, from early features to social support.application/pdf: 4.9 MB
The importance of connecting ecosystems for people with a rare condition.
Presentation at the 3rd International Scientific Conference HealthOnline,
12 september 2019 Ljubljana, Sloveniaapplication/pdf: 1.5 MB
Poster presentation at the European Conference on Rare Diseases & Orphan Products: ECRDapplication/pdf: 597 KB
Yet another description.application/pdf: 867.5 KB
WHO on New Perspectives on Global Health Spending for Universal Health Coverageapplication/pdf: 4.1 MB