Rare ICT (completed)

Emerging technologies offer new opportunities to elicit, share and communicate strategies to deal with everyday challenges of living well with rare health conditions. The starting point in this project was to offer an environment for co-evolving, relevant information that can assist in health related decision-making at home.  The content will be developed through participative and interactive website methods. The software environment, RareICT, is to help patients living with chronic conditions and family members in their everyday work. 

About the project

RareICT combines several wikis with semantic tagging and meta-data in a secure environment for patient-provider communication, MinJournal. Different stakeholders: persons diagnosed with a rare diagnosis; parents and family members; and health care providers (nurses, social workers, doctors) are offered a dynamic virtual environment to accumulate, exchange, develop and discuss contributed information, experiences and knowledge in a secure setting.


The purpose of this project is to develop a secure web-based environment as a learning resource that explores, systematizes and exchanges information and knowledge of “living well” with a rare diagnosis. In particular, the focus is towards everyday experiences and challenges, self-care and independence, peer-support and new modes of collaboration with the health care system.


RareICT is a service integrated in the patient portal MinJournal 




  • Senter for sjeldne diagnoser, Oslo University Hospital, Rikshospitalet
  • IT-Department, Oslo University Hospital, Rikshospitalet
  •  InterMedia

Start - Finish

2009 - 2011

Published Aug. 24, 2011 5:09 PM - Last modified Feb. 7, 2020 3:08 PM


Project leaders:

Sissel Jor, OUS

Anne Moen


Detailed list of participants