Bilateral Workshop II - Integrated care for persons with complex disabilities produced by RD using Norwegian model

During 20-21 of November 2015 in Zalau, was held the second bilateral workshop under the "NoRo – Frambu, Partnership for the Future" project - "Integrated care for persons with complex disabilities produced by RD, using Norwegian model".

The topic: Innovation in services for patients with RDs to ensure the continuity of care

The workshop was attended by a total of 53 people, of which 2 participants were from Norway partners. The workshop was held during two days. On the first day, the NoRo Center was visited which was followed by the plenary session. The Norwegian ambassador in Romania Mrs. Tove Bruvik Westberg and representatives of national and local authorities held the opening address speech.

The topics of the workshop:

• The story of a partnership: NoRo – Frambu (video presentation);
• Joint Presentation: NoRo – Frambu partnership for the future;
• Organizing care for patients with rare diseases in Norway (Norwegian model in rare diseases – Norwegian Consultative Unit for Rare Diseases);
• Collaboration between stakeholders only solution for rare diseases;
• The importance of training providers for people with diseases;
• Funding of social services from the authorities.

On the second day were outlined as key concepts: rare diseases, integrated care, centers of expertise, European reference networks, and case studies. It is crucial to refocus medical care to integrated care for rare diseases, centers of expertise and European reference networks. In addition is very important to take into account the recommendations on quality criteria for centers of expertise for rare diseases. These recommendations help in the development process or policy making on national strategies and plans for rare diseases.

The presentations included:

• Case studies on best practice examples, the Rheumatology Clinic of Cluj-Napoca was presented;
• camps for people with rare diseases in Norway and Romania;
• accreditation and licensing of social services;
• RARE Project Connect.

It was made a parallel between the camps organized in the summer by the Frambu Center and camps organized by NoRo Center. The conclusion was that these camps were a success among people affected by rare diseases. Sharing experiences by Frambu Center was a first step, which helped organize and conduct the NoRo camps.

Providing holistic services for rare disease patients may represent a number of challenges for patients due to obstacles created by the complexity of the disease, lack of treatment and the rarity of disease. In such situations integrated care aims to improve the quality of care especially when patients have no treatment. Accreditation and licensing of social services provides the ability to easily access specialized social services.

At the end of the workshop was highlighted the importance of collaboration among specialists, patients, therapists or other stakeholders to raise awareness of the needs of patients affected by rare diseases and to support them in trying to find more efficient solutions.

Almasi Zsuzsa, manager assistant