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

The purpose of organizing the workshop (28 to 29 April 2015) is to strengthen bilateral relations NoRo – Frambu  and share experience in approaching rare diseases in Norway, finding solutions for adaptation the NoRo Center activities using the Frambu model. Given that, the workshop was held in late April, we gave a great deal of time on the debate on organizing the first summer camps for beneficiaries from NoRo Center. On behalf of Frambu participated Karsten Barton, Lisen Mohr and Simen Aabo, representatives from RPWA, other social, medical service providers, colaborators of the NoRo Center and representatives of local authorities. It was made a presentation about the project goal and objectives, how the activities were designed to achieve our objectives.

The workshop was attended by 53 people, including 3 participants from Norway partners.

The workshop was held during two days.

The first day after the introduction and presentation of the participants, the workshop was opened with thanksgiving to the partner representatives and authorities present at the event. Collaborating with everyone present that makes possible the development of NoRo services and the improvement of quality of life of persons with rare disease.  The project "NoRo – Frambu   partnership for the future", was presented through which the event was organized.

The topics of the workshop were:

• Why we consider the NoRo – Frambu partnership sustainable;
• The Norwegian model;
• Services of Frambu Center;
• Why is integrated care important for patients with rare diseases.

It was studied the possibility of implementation of the Norwegian model, with the specific necessary adjustments of the NoRo Center. It was also presented the structure of activities for people with rare diseases from Frambu Center, including the structure of activities, interventions and personnel, budget and insurance required.

On the second day, starting from the presentation ʺPatient’s pathway in social servicesʺ, discussions focused on the needs of people affected by rare diseases and on how to make better use of community resources, networks, and exchange of best practices. There were several open discussions, than in the first day to give the possibility to participants to find out details regarding the activity of Norwegians. Discussions included the purpose and structure of the camps organized by Frambu Center, justifying their necessity. The purpose of these camps, beside offering enjoyable moments is to strengthen children/young people affected by the disease to develop support groups, to be appreciated and encouraged in what they do, to develop their personality and socialization skills in order to have a better life. However, it is important that the camp activities to be social activities, and not actual therapy activities.

Almasi Zsuzsa, manager assistant