The Malta Independent 22 March 2019, Friday

Rare diseases are rare, but rare disease patients are numerous

Malta Independent Thursday, 27 February 2014, 17:34 Last update: about 6 years ago

Health Minister Godfrey Farrugia this morning addressed a press conference to commemorate the World Rare Diseases Day, celebrated on the last day of February.

Dr Farrugia said that a disease is considered rare when it affects less than 1 every 5,000 population. 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 6-8% 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% 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.

The Government is committed to invest further in the monitoring of the burden of rare diseases, and the care of rare disease patients.  For this reason, it 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 Government also maintained this commitment with the provision of specific funding for the development of this policy document in the Budget for 2014. 

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, Mrs 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.

Dr Farrugia congratulated Mrs Muscat on her appointment as European honorary patron for EURORDIS.  Dr Farrugia said that “This is indeed an honour not only for Mrs Muscat but also for Malta as a nation”.

 

 
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