Pilot center for rare diseases in Romania turned ten years old

Pilot center for rare diseases in Romania turned ten years old. The center, financed from local and county funds, is unique in Romania and one of the few existing in Europe. He was born

from the life story of Dorica Dan, president of the National Alliance for Rare Diseases in Romania.

Pilot center for rare diseases in Romania, a life story

In Zalău, events were organized today that marked a decade since the establishment of the first pilot center for rare diseases in Romania. The founder of the Rare Diseases Center, Dorica Dan, said the idea came to her after attending an international conference on Prader Willi Syndrome in New Zealand. There he saw a presentation of a center for rare diseases in Norway and so he really wanted one

such a center for patients in Romania.

Dorica Dan, also said that the strength to make such a project came and as a result he wanted to provide adequate treatment to patients with rare diseases. Her daughter, Oana, has Prader Willi syndrome, so she attended the New Zealand conference then.

The only Center for patients with rare diseases in Romania

The center is currently the only one of its kind in our country. There are six such centers in Europe and they are part of the Rare Resources Net, Europe’s network of rare disease resource centers. There are services that

can support patients with complex diseases and syndromes, such as Prader Willi, who need both medical and social services and lifelong intervention. Over 90% of rare diseases have no treatment anywhere in the world and then such services are essential for them.

The center operates with funding from the Zalău Local Council and the Sălaj County Council, based on partnerships with the Ministry of Health and projects developed at European level.


Source: DoctorulZilei by www.doctorulzilei.ro.

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