At Rare Care World we aim to be an open information resource for individuals with a rare disease, their families and their care providers.

In 2009 the European Patient Organization on Rare Disease (EURORDIS) identified three common problems encountered by the various patient organizations:

  • a long way to the diagnosis
  • need of a multidisciplinary approach
  • lack of sufficient social care

The website addresses these three domains as identified by the patient organization and/or the caretakers. To facilitate interoperability of data the website also provides diagnostic or care items as described in the process with an international code.