A national policy on rare diseases will be launched in the third quarter this year with the aim of tackling treatment measures and offer patients and their families the support they required, Health Minister Godfrey Farrugia said today.

Addressing a news conference with Michelle Muscat, honorary European patron of the European Organisation for Rare Diseases on the occasion of Rare Disease Awareness Day tomorrow, Dr Farrugia said public consultation with the public and non-governmental organisations would be held in the summer.

He said that, in Malta there were some 25,000 people suffering from a rare disease including 22 per cent of cancer patients who had a rare type of cancer.

There are 8,000 rare diseases in the world, 186 of which are rare cancer diseases.

The minister said many patients suffering from a rare disease felt alone and confused and their financial and social burdens were heavier. They sometimes felt forgotten by society.

He said that diagnosis of a rare disease took longer as information was not always clear or adequate. Rare diseases were often chronic and progressive. They created a disability or could be fatal.

This government, the minister said, invested in cryopreservation for rare blood groups and introduced innovative medicine for MS patients on the formulary list.

Ms Muscat noted that some sufferers required specialised treatment abroad.

She appealed for Malta to continue to acknowledge people who were suffering in isolation and noted that rare diseases were being discovered continuously and scientists needed funds to keep up with their research.

The country was now working on creating the best links with hospitals and care groups abroad.

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