Today at the Planet of Rare Diseases we will talk about the lack of preventive services for screening and genetic counseling for patients with rare diseases and their families. The problem we are addressing is the diagnosing and access to proper care for patients with rare diseases in Romania. 90% of them are still undiagnosed and struggle to access the services they need, 50% are children, and 65% of patients must visit at least 7 different physicians before diagnosis. Approximately 50 % of the Romanian population lives in rural areas with no access to care services. Care pathways for rare diseases are not structured and patients don’t know where to go. Individually rare, collectively common: >350.000.000 people at global level and over 1.000.000 people affected in Romania and the vast majority is still undiagnosed or wrongly diagnosed.Our goal is to bridge the gaps between medical and social care, change the system of diagnostic and care for people affected by rare diseases using the community nurses, training them as case responsible, providing them a virtual tool for case management, connecting them with case managers and Centers of Expertise, elevating humanity by redirecting patients that are left out by the care system to meaningful connections that uplifts and unites. Romanian National Alliance for RD prepared an information material about this topic. Let's listen!
Planeta bolilor rare