Rare diseases affect 25,000 people
The government is planning to launch a rare diseases policy for consultation in the third quarter of 2014, with a view to finalising such a policy by the end of the year.
The Minister for Health, Godfrey Farrugia, said this morning on the occasion of World Rare Diseases Day, that a disease is considered rare when it affects less than one every 5,000 people. However, the low prevalence of these pathologies does not mean that there are a small number of patients affected by a rare disease. In Europe, rare diseases may affect as many as 30 million citizens. There are an estimated 6,000 to 8,000 recorded rare diseases and several new conditions are described every year in the medical literature.
Rare diseases affect between six to eight per cent of the population in the course of their lives. The total number of people affected by rare diseases in the EU is between 27 and 36 million. Projecting this range of percentages onto the population of Malta will result in an estimate of the prevalence of persons being affected with rare diseases in Malta to between 25,000 to 30,000 people. If one had to concentrate just on rare cancers, of which there are 186 recognised types, they represent in total about 22 per cent of all cancer cases, including all cancers in children, diagnosed in the European Union each year.
The Council Recommendation in this field (2009) calls for collaboration between European states for the surveillance of such rare diseases and for the establishment of reference centres for different diseases, or group of diseases, to which all member states could refer for the management of such diseases.
Moreover in this budget we addressed the needs of rare blood group disorders by making sure we have the cryopreservation specifically reserved for them, whilst the Ministry for Health recognised ME last Monday as a new and separate chronic ill health condition by the issue of a legal notice.
Addressing the press conference, Michelle Muscat said "This is an opportunity to raise awareness about the need for more support to rare disease patients. We need to work together with other international organisations like EURORDIS and other support groups to help out Maltese patients."
Referring to EURORDIS, Mrs Muscat, said that the need for Malta to participate on a European level to support community building initiatives helps to break the isolation of rare disease patients and their families in our country.