At least 60,000 people in Cyprus suffer from rare diseases, among the 30 million across Europe who are similarly afflicted, it emerged on Sunday.
The figures were released by National Committee for Rare Diseases a the health ministry .a day ahead of ‘Rare Disease Day’ on Monday. It is estimated that there are 6,000 to 8,000 different rare diseases in the world.
The committee said most rare diseases are genetic and include congenital abnormalities in growth, chromosomal monogenic syndromes, skeletal malformations, hereditary metabolic diseases, and hereditary cancers. There are also rare autoimmune diseases and childhood cancers.
it said people with diseases lose the most productive years of their lives and hence need timely and accurate diagnosis, multidisciplinary care and comprehensive treatment.
In Cyprus, through systematic work by health professionals, scientists, representatives of patients and other experts, a national strategy has been prepared to combat the phenomenon, the committee said.
Volunteer Commissioner Yiannis Yiannaki, referring to this year’s campaign slogan ‘The Voice of Patients’ said the aim was to achieve the changes necessary to improve the lives of patients and their families and carers.
After the rare diseases noted in Cyprus are congenital heart defects, genetic neurological diseases, myopathies, metabolic syndromes, skeletal malformations, and rare diseases in the thalassaemia sector. Yiannaki did concede that it was generally recognised that there are gaps in the provision of health care to those patients with rare diseases.
The campaign this year, he added, aims to strengthen the voice of these patients and raise society’s awareness, and that of health professionals regarding rare diseases. There were, he said NGOs active abroad and in Cyprus that encourage patients to demand equal opportunities in access to health care.