The web portal “www.malattierare.gov.it – insieme nel mondo delle malattie rare” has been launched on the 20th February 2020. It was promoted by the Ministry of Health in collaboration with the Rare Diseases National Centre of the Istituto Superiore di Sanità.
In Europe a disease is rare when it affects a small percentage of the population, particularly less than 1 out of 2000 citizens. Currently more than 300 million people, including a lot of children, are affected by rare diseases with whom they will live for the rest of their lives.
More than 6.000 rare disease have been identified worldwide. They have different features, but they have several issues in common regarding the scientific research, diagnosis, appropriate treatment and heath care. Many efforts have been made at local and international level, in order to overcome specific concerns related to the rarity of these disorders and most of all to improve the patients’ quality of life and to promote the equity for the rare diseases community.
The web portal aims to provide the citizens affected by rare diseases and the healthcare professionals involved in this field with a tool to share useful, updated and reliable information.
It is possible to search information about the different rare diseases and the related services, including all the available diagnosis and care centres, patients associations, information point and listening centres in Italy.
The web portal offers the chance to freely consult the regulations and guidelines, national and international initiatives, as well as the reference networks that promote supporting activities related to the rare diseases. Moreover, the web portal enables patients to share their experiences, stay updated, ask for any clarification and support, through the free service Telefono Verde Malattie Rare (TVMR) – 800 89 69 49.
Fondazione Gianni Benzi has always been involved in initiatives aimed at promoting the scientific research in the rare disease field. The aim is to guarantee the right to health to patients affected by rare disorders. To this end, Fondazione Gianni Benzi is pleased to support the development of the Italian web portal as tool that focuses attention to patients with rare diseases.
More equity for patients with rare diseases!
Do not forget that the Rare Disease Day will be celebrated on the 29th February 2020.