Planeta bolilor rare
Dan Alexandru


Virtual case management for rare diseases is a joint project of Romanian Prader Willi Assocoiation, Romanian National Alliance for Rare Diseases and Romanian Rare Cancers as the major problem of rare diseases in our country is low diagnose rate due to rarity of the diseases, rare expertise, more than 50 % of national populations living in the villages where there is no care infrasturucture.It is a virtual case management platform for patients with rare diseases and ECHO methodology to train community nurses as case responsible, putting them in contact with experts, addressing the needs    of the most vulnerable persons with rare disorders. It will equip communities with the right knowledge, at the right place, at the right time, mentoring for sharing knowledge and expertise, developing pathways for patients with rare diseases, bringing together families, community nursing, social services and medical experts;