Description
A special issue of the bulletin which we dedicate to describing what entails such holistic care for a person with rare diseases. This care involves a number of professions ranging from doctors, teachers, social workers to physiotherapists, speech therapists to palliative care experts.
This complex group of professions is needed to ensure better life quality for a person with RD.
This care needs to be concentrated around C of E for RD.
The goal is to leave no one behind and care for every person with a rare disease properly and well.