Integration of Rare Diseases into Social Services

Integration of Rare Diseases into Social Services

Insights into rare diseases from social media surveys

The internet, and social media platforms, are increasingly being used by substantial sectors of the worldwide population. By engaging effectively with online and social media, scientists and clinicians can obtain unprecedented access to relatively large cohorts of individuals with rare diseases, as well as their relatives, carers and professionals involved in their healthcare. Online surveys of...

Social and welfare aspects of rare diseases

Comprehensive and systematic solving of the problems which are associated with rare diseases is one of the elements of the prevention of social exclusion of patients and their families. Rare diseases are a particular group of diseases distinguished, not because of the clinical symptoms, but because of the low frequency of occurrence of different disorders in populations, which leads to the comm...

Social media methods for studying rare diseases.

For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online ...

Passive User Integration in Social Networking Services

Employee knowledge is a key asset of every corporate organization. Therefore organizations strive to preserve this knowledge in its different forms in a variety of ways. One kind of such knowledge is the network of social contacts employees develop over time, incorporating meta knowledge on who knows what. These networks depend on the active participation of employees and their usefulness is re...