“NoRo-Frambu”

Less than 10,000 of the 1.1 million people suffering from rare diseases appear in the official statistics in Romania, due to the lack of monitoring and registration deficiencies. These are isolated and exposed to social exclusion, without benefiting from the necessary services helping them improve their lives.

The aim of the project was to improve the access to specialized services for disabled persons suffering from rare diseases. The partnership with the Frambu Centre in Norway was strengthened by means of a mentorship programme. The activity of the NoRo Centre operated by the promoter was reorganized by including the summer camp services, in order to encourage socialization among the beneficiaries. Three camps were organized, to which 152 patients and nurses attended. Four patient representatives groups were created in order to assess the needs of the rare diseases patients and the services existing in various regions of the country, as well as to establish common objectives.

The research capacity of the Centre was strengthened by employing a geneticist and by developing five rare diseases research centres. The database managed by the Centre was developed using information materials on 45 rare diseases, contributing to a better operation of the Helpline for patients and specialists. More than 260 people received information on rare diseases through the Helpline (in Romanian and Hungarian). Information visits concerning rare diseases and available services were made in all the 8 regions in Romanian (240 participants). Four meetings were held with other services suppliers in the community (70 participants), in order to ensure continuity of care and the life improvement for the children with autism spectrum disorders. As a part of the efforts to create a reference network for rare diseases, five partnership agreements were signed with health services suppliers.

The project entitled “NoRo-Frambu” was financed under the programme RO09 – “Funds for Non-Governmental Organizations”, EEA and Norwegian Grants 2009-2014.

I go out of the bright room and hide in the car. I am crying and am ashamed of that and I am thinking of Vera who does this every day, of the hero parents of these children who need love and support more than anyone. Cosmin has met Moise today, an eight year old boy who makes complicated mathematical calculations by himself and who prefers talking to adults than to other children