At Rare Care 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 care takers. To facilitate interoperability of data the website also provides diagnostic or care items as described in the process with an international code.