News / June 28-Zalau The opening of the first Pilot Reference Center for Rare Diseases
On 28 June 2011 in Zalau, opens the first Pilot Center of Reference for Rare Diseases in Romania, financed by the Norwegian Cooperation Programme and Sustainable Development in Romania.
The project is initiated by the Prader Willi Association of Romania (APWR), located in Zalau, along with other partners including the Ministry of Public Health in Romania, Prader Willi Association of Norway, Norway Frambu Center, University of Medicine and Pharmacy "Victor Babes" of Timisoara and local institutions in Salaj County.
Romanian Society of Medical Genetics is one of the project partners. In this context, many specialists in the country participated in the project and the establishment of the reference center for patients with rare diseases. Patients across the country will benefit from its services. As specialists we must continue to support it.
At the opening event of the center participated: Minister of Health of Norway, Mrs. Anne-Grete Strom-Erichsen, Minister of Health of Romania, Mr. Cseke Attila, representatives of EURORDIS (European Association of patients with rare diseases) and patients' associations from Hungary, Italy, France, Denmark, Spain, Norway, Bulgaria, Russia, coordinator of the National Plan for Rare Diseases France, as well as representatives of DG SANCO and local officials.
Pilot Reference Center for Rare Diseases from Zalau will have a complex role. This component will have a day center for children with rare diseases or disabilities, and also a residential component for patient groups with the same diagnosis, who will be trained in disease management. Also, here patients and specialists in rare diseases will be able to access virtual learning platform - eUniversity.
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