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- Ελληνικά
I am pleased to announce the opening of the educational workshop organized for another year by the Pancyprian Alliance for Rare Diseases on the occasion of the celebration of World Rare Disease Day. The aim of the educational workshop is to raise awareness and awaken health professionals, policy makers and society, highlighting key issues related to the multidimensional needs of the rare disease patient group.
Rare Diseases refer to chronic and serious diseases that are mostly hereditary or congenital and cause complications over time in various organs. They have a progressive and degenerative course and require timely and valid multidisciplinary treatment and costly and specialized therapies, and often lead to disabilities of various forms and levels, making patients dependent in the most productive phases of their lives.
The state, through the GHS, has taken measures and is constantly looking for new ways to enrich and upgrade the services received by patients with rare diseases. This is achieved through the provision of diagnosis, prevention and treatment services for several rare diseases through specialised clinics, hospitals and scientific centres in the public and private sectors, while provision is made to support in various ways the specialisation of health professionals in the areas of rare diseases.
At the same time, an important aspect of the GHS, especially for patients with rare diseases, is the holistic provision of health care services.
At the same time, an important aspect of the GHS, especially for patients with rare diseases, is the holistic provision of health care services. In addition to physicians, the GHS contributes with health professionals such as nurses, psychologists, clinical dieticians, physiotherapists, speech and language therapists and occupational therapists, so that the patient is supported by specialists at all stages of treatment.
With regard to patients' medication, special provision has been made for orphan and innovative pharmaceutical products, which are provided to patients on the basis of specific internationally accepted guidelines, ensuring patients' timely access to them.
In addition, the Ministry of Health, recognizing the importance of early prenatal screening, has secured approval through the Council of Ministers, in a proposal to extend the Neonatal Screening Programs with an additional 8 diseases, for a period of 3 years and after evaluation for an additional 2 years. The laboratory part of the programme will be implemented by the Cyprus Institute of Neurology and Genetics and the Américos Argyriou Centre for Preventive Paediatrics. The clinical part will be carried out by the Archbishop Makarios III Hospital and the coordinator of the Programme will be the Ministry of Health.
I must also note that where patients are diagnosed with rare diseases that require specializations that we do not have in our country, the Ministry of Health ensures by all means their care through specialized medical centers abroad.
Friends,
The role played by Non-Governmental Organizations for patients is very important. The recognition of their important role is also acknowledged through the cooperation that the Ministry of Health has established with the Pancyprian Alliance of Rare Diseases, always focusing on the patient.
In conclusion, I would like to warmly congratulate and especially thank the Pancyprian Alliance of Rare Diseases for the practical support and guidance that it has been offering to patients over the years through its continuous actions and the support provided to them through the "Nest" centre.
In conclusion, I would like to warmly congratulate and especially thank the Pancyprian Alliance of Rare Diseases for the practical support and guidance that it has been offering to patients over the years through its continuous actions and its support through the "Nest" centre.
I wish the conference every success and fruitful discussions.
(ΔΚ)
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