Tromso Telemedicine Laboratory (TROMSO) Marathon Projects
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The long tail and Rare Diseases:
![TTL Project Marathon Rare Disease and Social Media: an opportunity for the long tai l Manuel Armayones Ruiz, PhD Assistant Professor Psinet Research Group- Internet Interdisciplinary Institute Open University of Catalonia (Spain) [email_address] http://in3.uoc.edu/opencms/opencms/webs/grups_de_recerca/psinet/CA/](https://image.slidesharecdn.com/deftromso-110823073958-phpapp02/85/Tromso-Telemedicine-Laboratory-TROMSO-Marathon-Projects-1-320.jpg)
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Tromso Telemedicine Laboratory (TROMSO) Marathon Projects
- 1. TTL Project Marathon Rare Disease and Social Media: an opportunity for the long tai l Manuel Armayones Ruiz, PhD Assistant Professor Psinet Research Group- Internet Interdisciplinary Institute Open University of Catalonia (Spain) [email_address] http://in3.uoc.edu/opencms/opencms/webs/grups_de_recerca/psinet/CA/
- 2. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 citizens (Orphan Drug Regulation 141/2000). Rare diseases may affect 30 million European Union citizens . Rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis .
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- Brief description: Internet is a common tool in our daily living that offers new possibilities for communicating and delivering health care treatments. One of these possibilities is to use Internet to create a community where professionals (such as psychologists) and caregivers can work together in order to generate processes to improve the quality of life, by providing caregivers with resources to cope with difficult situations. From this perspective, in this session, two projects aimed to improve quality of life of caregivers will be discussed. Psinet is a research group of the Internet Interdisciplinary Institute of the UOC. We work on Psychology, Health and the Net and now we are working on using the internet to improve the quality of life of different groups of people.