A call to solidarity and to the acknowledgement of rare diseases as a real problem, not to be dismissed under the veil of indifference.

Since its launch in 2008 as an European initiative, this campaign has been successfully trying to draw the attention of both society and individuals, nations, governments and institutions to the matter of rare diseases, in order to intensify national politics relating to this subject and to heighten institutional standards of dealing with the challenges that a rare disease poses.

Rare Disease Day doesn’t only appeal to peoples’ conscience and states’ resources but also encourages common strategies in research and healthcare which could lead to finding solutions for similar problems of each particular disease and hopefully to a better treatment and an improvement of quality of life for those who are affected.

Fondazione Gianni Benzi is honoured to be originally part of this world wide initiative, also acting as partner in the project InNerMeD-I-Network (Inherited NeuRoMetabolic Diseases Information Network), that aims to create an information network on research, diagnosis and treatment of neurometabolic diseases (iNMDs), addressed to patients and their families.

Fondazione Gianni Benzi joins this event becoming a friend of Rare Disease Day and showing its support on its official website.

For more information please visit the official Rare Disease Day website.