«Today marks the 17th edition of Rare Disease Day , over the years it has become a global event to raise awareness of the challenges faced by those living with a disease of this type . With over 7,000 known rare diseases and only 5% with an available cure , it is essential to raise awareness, speed up diagnosis times and tirelessly continue to support research. A special thought to those who live with a rare disease, to their families and to all those who support those who are facing this battle. Together we can make a difference!". Thus the Minister for Disability, Alessandra Locatelli , on the occasion of the event organized in Rome for Rare Diseases Day today.
" A person must not be identified with their illness or disability , they also need the recreational, social, emotional, relational dimension and, above all, to be happy", continues the minister. Which still speaks of the need for greater "attention to moments of hospitalization, the provision of services, but also of health and social-health aids and aids, and then the issue of territorial connection.
The words of the President of the Republic, Sergio Mattarella, also arrived on the topic. «Every disease evokes conditions of fragility, sometimes of isolation, particularly in the case of rare diseases, which present difficulties in diagnosis and therapeutic approach , as well as significant burdensome care and management of patients, also due to poor investments in the sector of research and pharmaceutical experimentation", the words of the Head of State. « In Italy there are more than two million people afflicted by diseases of this nature . World Rare Disease Day draws attention to this particularly difficult condition. The continuous progress of personalized medicine, genomic and biomedical technologies offer new treatment possibilities for various pathologies, paving the way for more targeted and effective therapies and making the future of many people affected by rare diseases increasingly encouraging, provided that the community knows how to take responsibility for the right to health of these citizens". «The approval of the " ", which took place last May – explains Mattarella – represents a , because no disease is ever too much rare enough to not deserve an effective treatment."
