Some 60,000 Cypriots – making up around one tenth of the population – have a rare disease, according to figures presented to the House Health Committee.

At around 10%, the figure of people with rare diseases in Cyprus is higher than the European average of around 6-8%. The number includes a significant number of children since around 50% of these ailments are diagnosed during childhood.

The last day of February has since 2008 been declared Rare Disease Day and this year’s theme is ‘Join us in making the voice of rare diseases heard’.

A group supporting children with rare diseases in Cyprus and their parents, Monadika Xamogela, will on Monday, February 29 be marking Rare Disease Day with events at over 100 schools. Pupils have been asked to wear jeans on that day – a reference to the genes responsible for so many of the rare diseases.

The pupils will watch a short, informative film and then be photographed with their arms in the air in a show of support for children with rare diseases. The Cyprus Alliance for Rare Disorders (CARD) will also be holding an event in Phaneromeni Square in Nicosia at 11am on Sunday, February 28.

Monadika Xamogela was established on February 21, 2014, establishing goals based on each members perspective of patients needs which range from early diagnosis, expertise, treatment via a multidisciplinary team, support and information.

Association chairman Katia Kyriacou and other members earlier this week briefed the House Health Committee on their efforts. According to Kyriacou, Cyprus has yet to create a registry of rare diseases which means few protocols exist to deal with them.

Kyriacou defines a rare disease as one which affects no more than one person per every 2,000. They are serious ailments that in some cases are life-threatening and/or cause mobility or other difficulties and great mental anguish, she said.

The families of children with rare diseases have the additional difficulty of struggling to find the specialist care they need.

As well as rare diseases being officially defined and a register being created, Monadika Xamogela also hopes for the creation of a specialised centre which will provide European-standard inpatient and outpatient care.

As things stand now, just one room at the Makarios III Hospital in Nicosia has been set aside for the purpose.  Occasionally, this lack of space means other areas of the hospital and even its corridors are used. A lack of a specialised toilet means that the young patients have to use a regular one which is very difficult for many of them.

Although an agreement has been reached for a prefabricated facility currently used for another purpose to be upgraded and handed over, Monadika Xamogela hopes to raise funds for a more significant expansion.