On February 28, 2014, the seventh edition of Rare Disease Day, themed “Join Together for Better Care,” took place. It was coordinated by EURORDIS (European Organisation for Rare Diseases) internationally, and by National Alliances and Patient Organisations at the national level.
Since its first edition, Rare Disease Day aimed to raise public awareness about issues affecting the rare diseases community, whose conditions were then recognized as a public health priority.
The theme for 2014 was caring, one of the most urgent issues to face and a universal need for patients and their families around the world. Caring, in fact, had many facets due to the complexity and rarity of these conditions. Thus, one of the main objectives was to develop a common strategy that, independently of the peculiarity of each single disease, could address and solve common problems.
It was necessary to raise awareness among the system’s stakeholders—institutions, politicians, doctors, the scientific community, pharmaceutical companies, and healthcare and social professionals—in order to gather knowledge and resources to achieve results not only in discovering new treatments, but also in improving the quality of life for patients and their families.
Fondazione Gianni Benzi, from its origins involved in the field of rare diseases, was a partner in the InNerMeD-I-Network project (Inherited NeuRoMetabolic Diseases Information Network). This project aimed to create an information network on research, diagnosis, and treatment of neurometabolic diseases (iNMDs), addressed to patients and their families.
Fondazione Gianni Benzi joined this event, becoming a friend of Rare Disease Day and showing its support on its official website.