A national policy will be launched in the third quarter of this year to address the needs of people with rare diseases, Health Minister Godfrey Farrugia said yesterday.
Europe today marks the 30 million people with rare diseases in a bid to improve access to treatment and recognition of these conditions.
On Tuesday, Dr Farrugia told Parliament that myalgic encephalomyelitis (ME) and fibromyalgia were going to be recognised as chronic diseases.
This was welcomed by Alternattiva Demokratika and sufferers of the debilitating illness ME, who insisted urgent action was needed, like the setting up of a specialised unit for neuro-immune diseases in hospital.
Yesterday, the minister said that consultation about a national policy will be held with the public and non-governmental organisations in the summer.
The strategy will be launched later on this year with the aim of tackling treatment and support mechanisms for patients and their families.
In Malta, an estimated 25,000 people suffer from a rare disease, including 22 per cent of cancer patients with a rare type of cancer.
Dr Farrugia said many of those suffering from a rare disease felt alone and confused and their financial and social burdens were heavier than other more known diseases, while some even felt forgotten by society. Diagnosis of rare diseases took longer, as information was not always clear or adequate. Rare diseases were often chronic and progressive, triggering off a disability and could be fatal.
In the past months, the government invested in cryopreservation for rare blood groups and introduced in the formulary list innovative medicine for Multiple Sclerosis patients.
Dr Farrugia was addressing a press conference with the Prime Minister’s wife, Michelle Muscat, who has been elected Honorary European Patron by the European Organisation for Rare Diseases (Eurordis).
She appealed for a sustainable recognition of people who were suffering on their own, “in isolation”.
Sometimes, when there were only one or a few Maltese patients suffering from a rare disease, they relied on support groups and hospitals abroad. Their challenges grew when they had to move abroad with their whole family, Ms Muscat added.
Factbox
There are some 8,000 rare diseases;
75% affect children;
30% die before they turn five;
80% of rare diseases have identified genetic origins.