Pilot Reference Center for Rare Diseases – NoRo is a resource center that provides therapeutic and medical services. Its main purpose is to provide integrated health and social care services for people affected by rare diseases and their families, by facilitating access to care, information, research and education.

NoRo Center offers information and training services for patients, by organizing groups of patients diagnosed with the same rare disease. Thus, each group of patients consists of a maximum of 14 people who participate in training sessions, lasting 5 days, during which time they are offered therapy, education and rehabilitation. NoRo Center provides training in independent living skills for young people with disabilities. It also offers individual and group therapy services for 60 children, in the Day Center for the recovery of children affected by rare diseases and autism spectrum. In addition, the center also has a Help Line service for patients, families or professionals looking for information and support.

Our center has developed a videoconferencing network in collaboration with seven medical universities in the country, facilitating access to ongoing care, information and meetings between doctors and patients while avoiding transportation costs. The exchange of knowledge and the exchange of good practices on the management of remote consultations, counseling and medical and social training are essential in the field of rare diseases, as expertise is limited. In this sense, the Center collaborates with NGOs, medical, social and educational service providers, employers and with institutions that have expertise in the field of rare diseases.
At a local level, NoRo Center organizes meetings with those kindergartens and schools where the children that attend the Day center are integrated.

We work in partnership with public authorities and stakeholders at national level, which is important for promoting positive measures in the field of health, education and the fight against poverty and social exclusion. We collaborate with the Ministry of Health, the National Authority for People with Disabilities and with the Romanian National Alliance for Rare Diseases (ANBRaRo).
As a one-stop source service, NoRo Center is able to offer a holistic approach, implementing case management for people affected by rare diseases. The activities undertaken by NoRo Center are meant to help people strengthen their skills and abilities. The aim is to enable them to have a full participation in the community life and to promote their fundamental rights. The Center includes a preventive approach through the therapeutic education of the beneficiaries and by connecting with other services to ensure the continuity of care. For people living with rare diseases, early and continuous intervention is very important. When combined, these factors generate a long-term return on investment, because family members are more motivated to stay at work, as their child or relative is well cared for and equipped with the skills necessary for independent living.

MAIN ACHIEVEMENTS
Thanks to the high quality and integrated social services offered, NoRo Center is now recognized by the competent authorities as a provider of medical services and as a specialized social service with research capacity.
NoRo Center has been recognized by the Ministry of Health as a Center of Expertise in Rare Diseases, is part of the national network RO-NMCA ID and also part of the European Reference Network ITHACA and the European network of Resource Centers for Rare Diseases – RareResourceNet.