WHAT WE DO
We believe in the worth of each and every life. This is why we chose these diseases in the first place. They’re so rare that public and private players consider large-scale research investments inappropriate. For our part, we think everyone has a right to a cure and to a better life. We believe every parent of every sick child should know there’s someone out there working for them. And we won’t stop until we write that word ‘curable’ next to the names of all genetic diseases!
We target rare genetic diseases.
These diseases have terrible names. Sometimes they are even nameless. They generally emerge while the patient is still a child, and change the lives of all concerned. These are rare diseases. Few people are vulnerable to them. We combat precisely these diseases because all patients have a right to hope. These diseases, these emergencies, regard 6-8% of the world’s population.
Every life is important.
Some of these rare genetic diseases await large-scale investment on the part of public or industrial players. They are “orphans”. They await research and drugs. Considered singly, these diseases are statistically insignificant. Can we say the same about the lives of any of our patients, as individuals?
Thanks to the generosity of millions of Italians, the research that we have financed has brought results that are saving lives worldwide, and changing many children’s’ lives.
Loneliness has always been a part of the lives of people challenged by rare diseases (patients, researchers, parents and associations). We gain strength by creating synergies on various levels.