The President of the Republic, Sergio Mattarella, has issued the following statement:
(Courtesy translation)
«By definition, curing patients affected by rare diseases is a particularly complex task. This year, Rare Disease Day is quite rightly dedicated to equality in accessing treatment.
The issue stresses the need to make sure that all people, regardless of the nature of the disease that affects them, may enjoy equal rights and equal opportunities for undergoing therapy. Such an endeavour is not just about accessing drugs: it must extend to all the therapies, treatments and services the entire treatment process involves. Today – despite the significant progress made in recent years – a specific drug therapy exists for only 5% of the more than 8,000 known rare diseases. Hence the importance of research and the need to provide the necessary therapies, as well as rehabilitation measures and social welfare services.
Italy stands out for taking action to promote access to drugs for rare diseases and for speeding up the process running from the authorisation stage to actually making therapies available.
However, discrepancies at the territorial level remain, hindering the effective use of services and bringing about disparities that can no longer be accepted: the right to health, enshrined in our Constitution, must be uniformly guaranteed across the whole nation.
The people who suffer from rare diseases, their families, the associations that assist them with expertise and passion deserve the Republic’s acknowledgment and support for their efforts in guiding public policies and in raising greater social awareness of this phenomenon».
