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.
Poster IPA conference february 2023.
Understanding the positive / neutral and negative aspects of living with a rare condition may help parents and communities to support growing up towards a fulfilled life. Incorporating the ICF in personal digital health records promotes health and well being at all ages Sustainable Development.
In 2021 voerde stichting Rare Care World het project 'Een persoonlijke gezondheidsomgeving (PGO) voor iedereen' uit. Het verslag daarvan is nu toegevoegd aan deze website.
Samenvatting:
Een Persoonlijke gezondheidsomgeving (PGO) gespecificeerd op de ‘eigen’ aandoening, geeft mensen met een chronische aandoening, beperking of psychische problemen en hun naasten meer regie op het dagelijks leven. Inzicht in eigen gezondheidsdata geeft de mogelijkheid adequaat te reageren op resultaten van laboratoriumuitslagen; volgen van de effecten van medicatie of hulpmiddelen op het optimaal meedoen in de samenleving.
Het project heeft voor mensen met Shwachman Diamond Syndrome, Thalassemie en Sikkelcelziekte, een PGO toegespitst op de eigen situatie gerealiseerd in ‘MijnPGO’. Het is aangetoond de aanpak schaalbaar is tot alle (zeldzame) chronische en beperkende aandoeningen.
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
