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.
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