Statement by President Mattarella on World Rare Disease Day

Courtesy translation

The President of the Republic, Sergio Mattarella, has issued the following statement for the World Rare Disease Day:

«Every disease evokes a condition of fragility, sometimes isolation. This is especially true for rare diseases, which can be hard to diagnose and entail difficulties in terms of therapeutic approach, as well as remarkably burdensome treatment and patient management, even because of the lack of investments made in the field of research and pharmaceutical experimentation.

Over two million people in Italy are affected by these diseases.

The World Rare Disease Day draws attention to this particularly troubling condition.

The constant progress of precision medicine and of genomic and biomedical technologies offers new treatment options for several pathologies, paving the way for increasingly targeted and effective therapies, thus allowing many people affected by rare diseases to look more confidently to the future, provided that the community proves capable of taking responsibility for these citizens' right to health.

We must step up investment in research and facilitate a multi-disciplinary approach in order to identify swift and effective methods in terms of diagnosis and treatment.

The "Rare diseases national plan 2023-2026" was approved in May 2023. That was a great step forward for all those people who ask for concrete solutions for a better quality of life. No disease is rare enough not to deserve effective treatment».