Rare Disease Day is celebrated again this year on February 28th with the aim of raising awareness of the living conditions of persons affected by rare diseases and of their families. Rare diseases are often severe, chronic, and degenerative conditions which affect a limited number of individuals but, taken as a whole, involve millions of people worldwide.
The Day seeks to draw the attention of public institutions, the scientific community, and the public to the need to ensure timely diagnosis, adequate care, access to treatment, and appropriate social support. It also promotes the recognition and protection of patients’ rights by addressing social isolation, inequalities, and the challenges arising from limited resources and insufficient research.
A central aspect of Rare Disease Day is public awareness-raising, aimed at making visible realities that are often overlooked or poorly understood. Through information campaigns, public events, personal testimonies, and initiatives in schools and institutions, the Day helps to increase knowledge of rare diseases, overcome prejudice, and promote a culture of solidarity. Awareness is a fundamental tool to foster the social inclusion of patients and to encourage stronger political and health-policy commitments in the fields of research and access to care.
Rare Disease Day therefore represents a moment of collective commitment to affirm the right to health and inclusion, and to promote fairer and more equitable health policies at both national and international levels.
References
Rare Disease Day.
UNIAMO. Federazione Italiana Malattie Rare.
Malattierare.gov.it. Insieme nel mondo delle malattie rare.
