Information and consultancy visits at general social assistance departments in various counties on rare diseases

During the 14 months of the project we initiated collaboration with general social assistance departments in different development region (one service in each region) to inform about the services which NoRo Center can provide for people with disabilities produced by rare diseases and to seek ways of collaboration for their orientation to needed specialized social services.

These visits are a win-win approach: on the one hand, we promote and inform about the center's services, we provide information about rare diseases and find out what problems these institutions face when encountering difficult cases of rare diseases. On the other hand, we want to provide support in their work, trying to identify social services that could integrate patients with rare diseases, giving them information, and training. Information visits in Satu Mare, Alba Iulia, Craiova, Bucharest, Constanta, Timisoara, Pitești, Botoșani. The participants of these meetings were representatives of local or county authorities, providers of medical, social services, and representatives of patient’s organizations – actors involved in the management of rare diseases.

On the meetings were raised different issues faced by the people affected by rare diseases:

• lack of services in rural areas and that patients are not interested in statistics and costs of services, they must have access to the services they need;
• the role of communication and collaboration between patient organizations, that signalsthe needs faced by patients and specialized service providers, policy makers and local community authorities which must develop support tools for people in need;
• specific problems of people affected by rare diseases and different possibilities for collaboration between those present. Discussions were focused on the importance of centers of expertise, stressing that the Order on the organization, functioning and methodology of the certification on centers of expertise for rare diseases, has been approved, good news for all those interested in the problem of rare diseases.

To improve access to specialized social services for people with disabilities caused by rare diseases in Romania, it was popularized the work of NoRo Center and its development objectives after the Norwegian model – Frambu Center.