We support patients suffering from rare diseases
AKEL on the World Day of Rare Diseases
28 February 2022, AKEL C.C. Press Office, Nicosia
In Cyprus, it is estimated that 60,000 of our compatriots suffer from rare diseases. These diseases are a major public health issue. They are chronic and serious diseases that need expensive and specialized treatments and often cause disabilities.
AKEL expresses its support towards the struggle patients and their families are waging to address rare diseases. AKEL states that it stands by them, recognising their right to free quality health care and to the provision of modern treatments based on evidence-based scientific protocols.
We recall that the only real step towards supporting people with rare diseases was taken in March 2012 with the formation of the Technical Committee of the Ministry of Health, which also prepared the National Strategy. It is regrettable, however, that for this category of our fellow citizens, apart from information, no other pillar of the National Strategy has been promoted in any substantive way.
We urge the Government, far from any economistic approaches, to adopt holistic policies for the treatment of rare diseases that will promote:
- Timely and valid diagnosis
- Regular monitoring based on protocols
- Proper health care based on protocols and patient needs
- In-hospital care
- Provision of other necessary care – e.g. home care, psychosocial support, social support, physiotherapy etc.
- Immediate free access to appropriate medicines based on scientific evidence
The right to health is sacred which is precisely why we support the just demands of patients, the protection of the National Health Scheme and people’s equal access to quality health care.
