In Cyprus the exact number of rare patients is not known, although based on European statistics, it is estimated to be between 60,000 and 80.000 was mentioned at a press conference of the Pancyprian Alliance for Rare Diseases (PASP) on the occasion of the World Rare Disease Day.
According to a statement of the PASP, "the majority of rare diseases, about 80%, are due to genetic or hereditary causes, with some of the diseases being geographically defined within a country."
According to a statement of the PASP, "the majority of rare diseases are due to genetic or hereditary causes, with some of the diseases being geographically defined within a country.
For example, in Cyprus there are locally defined diseases such as Cystic Fibrosis in Athienou, Amyloidosis (Crusader's Disease) in Pahna, Friedreich's ataxia in Paphos, etc."
As it was said at the Press Conference, "the challenges facing a patient with a rare disease, today, is access to adequate medical specialization because in countries with small populations such as our country, the problem is even greater so patients in many cases are forced to go abroad for medical treatment".
Also, "access to pharmacotherapies is equally difficult, since companies are reluctant to develop drugs for a limited number of patients and even if such drugs are developed, their prices are extremely high".
As noted, "nevertheless, in recent years in our country, the continuous awareness of rare diseases through various actions and events of patient organizations active in the field, contributes to a possible future reversal of the current picture so that rare patients can be fully integrated into society".
The Press Conference presented the results of five years of operation of the "Folia" Centre, which was created by the Pancyprian Alliance for Rare Diseases, with the support and cooperation of the Bank of Cyprus, being the first in Europe exclusively addressed to patients with rare diseases. It has been recognised by the European Organisation EURORDIS as a Specialised Social Service Centre.
The Minister of Health, Michalis Hadjipandela, in his address referred to the work of the Rare Diseases Alliance and the significant contribution of the "Nest" Centre.
The Minister of Health, Michalis Hadjipandela, in his address referred to the work of the Rare Diseases Alliance and the important contribution of the "Nest" Centre.
At the same time, he stressed that "the Ministry of Health has taken serious steps to offer diverse and high quality services, with emphasis on the necessary steps to ensure the provision of orphan drugs for the needs of patients".
Bank of Cyprus Corporate Responsibility Manager, Elli Ioannidou, referred to the results of the Centre, which she described as impressive, which she said proves that "our investment has brought results and contributed to improving the lives of so many of our fellow citizens".
He also said that "the Pancyprian Alliance for Rare Diseases is also a member of SupportCY and this makes us very happy as it gives us an opportunity to contribute to highlighting the problem of patients with rare diseases and to work together to mitigate the problems through partnerships between the members of the network".
The President of the Pancyprian Alliance of Rare Diseases, Haralambos Papadopoulos, in his address to the Press Conference, referred to the challenges faced by patients with rare diseases such as access to treatments as, he said, only 5% of these diseases have treatments and they are extremely expensive.
Source: CNA
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