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March marking the World Day of Rare Diseases takes place in Sofia

Photo: EPA/BGNES

Relatives of patients suffering from rare diseases organized a march in Sofia on the occasion of the World Day of Rare Diseases. They call on the state to develop a National Plan for people with rare diseases.

The march was attended by relatives and patients with rare diseases, as well as those who make daily efforts and care to make the daily lives of these patients full and dignified.

In Bulgaria, nearly 370,000 people live with rare diseases.

Natalia Maeva, chairwoman of the Bulgarian Society of Patients with Pulmonary Hypertension, said: "Healthcare in Bulgaria has been neglecting the problems of people with rare diseases for many years. This is simply our march for hope and we hope that the institutions will open their eyes this time, because it is not normal for a member state of the European Union to continue to have no National Plan for Rare Diseases, and unfortunately, our children and our relatives are forced to seek treatment abroad if it turns out that they suffer from some rare disease."

World Rare Disease Day has been celebrated since 2008 at the initiative of the European Association for Rare Diseases and the Canadian Association for Rare Diseases. Its main goal is to encourage the creation of effective policies for prevention, early diagnosis and equal access to high-quality health and social services. 

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