Integrated care at NoRo Center for Rare Diseases Romania

Goal:The primary objective of this initiative is to assess and disseminate the integrated care model implemented at the NoRo Centre for Rare Diseases in Zalău, Romania.

 

Method: ology: The evaluation is structured around the nine pillars of integrated care established by the International Conference on Integrated Care (ICIC), focusing on delivering holistic, people-centred, and sustainable services for individuals with rare diseases and disabilities.

Established in June 2011 by the Romanian Prader Willi Association and funded through Norway Grants, the NoRo Centre for Rare Diseases was created as a transformative hub for integrated care. Drawing inspiration from the Norwegian Frambu Resource Centre for Rare Disorders, NoRo has adapted this model to Romania’s local and national context, aiming to provide coordinated, multidisciplinary support that bridges healthcare, social services, education, and community engagement.

 

At the heart of the NoRo Centre’s approach lies a shared vision of dignity, equity, partnership, social, rehabilitation, and mental health. The Centre delivers accredited social services through two day-care centres, serving around 100 beneficiaries daily. It also provides accredited medical services via a clinical ambulatory, implements the national therapy programme for children with autism spectrum disorder, and coordinates case management for isolated individuals in rural areas through collaboration with community nurses nationwide. Additionally, the Centre organizes both in-person and online support groups for patients with the same rare diseases, fostering peer support and shared learning.

 

NoRo Centre is recognized nationally and internationally as a Center of Expertise for Rare Diseases and is a member of the European Reference Network ITHACA through the Romanian Network for Congenital Anomalies with Intellectual Disabilities (RO-NMCA.ID) and RareResourceNet – European Network of Resource Centers.

Central to the NoRo model is the active participation of patients, families, and carers as equal partners in care and empowers beneficiaries to take an active role in their health journey. The staff—comprising 30 dedicated professionals—work closely with patients to foster empowerment, trust, and shared responsibility.

 

Collaboration is another cornerstone of NoRo’s integrated care framework. The Centre has trained over 1,200 community nurses in rare disease case management and introduced a digital module in the national nursing platform for reporting these cases to the Ministry of Health. By building partnerships with local authorities, other service providers, and international organizations, NoRo strengthens community capacity and ensures continuity of care. Ongoing training and professional development are key to maintaining high standards and fostering innovation.

 

Despite persistent funding challenges, NoRo has achieved sustainability by integrating accredited social services funded by local and county authorities with medical services financed by the National Health Insurance. Strategic governance ensures that operations align with the Centre’s integrated vision and long-term goals.

Innovation and digitalisation are central to NoRo’s adaptability. Since 2014, it has maintained an electronic patient registry, and we launched an online platform www.centrulnoro.ro to facilitate consultations, therapies, and patient group meetings.

 

Conclusion: s: Locally adapted, patient-centred, and collaborative care models can drive innovation and equity in complex health and social care ecosystems. NoRo Centre’s experience offers a replicable blueprint model of integrated care for rare diseases.