This project will support 500 patients with rare diseases in Romania, providing them with the support to face their daily challenges through face to face and online medical consultation, therapies, counseling and psychological support for patients and families at NoRo Center and NoRo Center online services: www.centrulnoro.ro. We will bridge the gaps between medical and social services establishing and training a support network of community nurses to orient patients to the services they need.
The problem we are addressing is the limited access to proper care for 1 million patients with rare diseases in Romania. 90% of them are undiagnosed, live isolated and struggle to access the services they need, 50% are children, and 65% of patients had to visit 7 different physicians before they were diagnosed. Approximately 50 % of the Romanian population lives in rural areas with no care infrastructure and services. Care pathways are not structured and patients don't know where to go.
In the last 9 years NoRo Center provided integrated care, medical and social support and therapies for approximately 1800 patients with rare diseases (900 of them are in our registry since 2015). We are extending our services online (consultations, therapies, therapeutic groups of patients and training) www.centrulnoro.ro. To support the vulnerable people from villages we will train 300 community nurses on case management for rare diseases to inform and orient patients to Centers of Expertise.
The project will improve the quality of life for 500 patients with rare diseases through therapies, training, sharing experience with patients in groups, learning how to cope with the diseases and overcome the challenges. Providing rare diseases case management training for 300 community nurses will create a resource network at national level to coordinate care pathways and empower patients with rare diseases and will bridge the gaps between between medical and social care.
This project has provided additional documentation in a PDF file (projdoc.pdf).
