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.
ePoster at the RCPCH Conference Singapore, March 6-7 2021
In this paper, we describe the analysis of rare disease papers using natural language processing, machine learning, and visualization techniques to determine the topic areas described in the papers about Shwachman disease and Thalassemia disease.
IT coding for information exchange on Medication and Vaccination
Classifications and Iso standards as a tool for Sustainable Development Goals.
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.
The importance of connecting ecosystems for people with a rare condition.
Presentation at the 3rd International Scientific Conference HealthOnline,
12 september 2019 Ljubljana, Slovenia
Poster presentation at the European Conference on Rare Diseases & Orphan Products: ECRD
Yet another description.