Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.
Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients’ quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
In Cyprus there are 6,000 patients of rare disease and half of them are children.
Cyprus patient organisations joined Rare Disease Day in its second year, in 2009. Participants have used the day to successfully engage the media in press conferences and therefore increase awareness in the general public.
Within the framework of events for the Rare Disease Day, the Cyprus Alliance for Rare Disorders is organising an illumination event of key buildings in Nicosia.
Namely, the Presidential Palace, the Ministry of Health and the Cyprus Institute of Neurology and Genetics – all key spaces for rare diseases, will be illuminated.
Snapshots from the illumination event will be recorded and broadcasted live on the big day itself, February 28, 2021 along with key information for the rare disease community!