Rare conditions are often a combination of by itself not so rare congenital anomalies or diseases presenting at different ages. Sometimes characteristic features are present but unrecognized. Once a diagnosis is established, different specialist need to collaborate and with primary care providers, the patients, and their families.

Health and Internet Technology is the key to a medical home, as a network of healthcare providers and services sharing information with patients and families regardless of location.  Still, most patient data are locked in IT systems and there is little harmonization of interoperable data exchange.

Regardless of the nature of the condition, for each disease set international codes can be aligned to record features, diagnosis, and diagnostics as well as therapies and social services.  

A Medical Home for Rare Conditions

 ‘The voice of the patient’

Individuals with a rare condition do not regard themselves as patients. They are persons with common needs and wish to be common. To learn, to participate, to speak for themselves. Seven diseases will serve as the example on how these conditions can fit in one  ‘ medical home ‘  or chronic care model:  care close by home when possible, specialist care when needed and self- management when wanted.

Thanking initiating patient organizations, the partners in project S06500 and project partners in ‘ Vroegsignaleren’