• Phone: +39 338 451 7154
  • Email: ilsorrisonegliocchidirichi@gmail.com

About us

Il sorriso negli occhi di Richi is a non-profit organization that aims at raising the awareness of the fact that according to the specialists there are rare diseases for which there is no medical solution.
Mobilizing human and financial resources to support research and development of a model that contributes to the quality and life expectancy of patients, in the belief that even in situations that seem terminal, changing perspective can change the perspective.

Specialist medicine is limited in its ability to optimally diagnose and treat patients who do not present classic symptoms or whose disease course is not typical. Rare diseases receive little research as commercial pharmaceutical companies have no interest in promoting research. The diseases remain, literally, "orphans", with no one taking care of them. Patients, including many children, do not receive an satisfying diagnosis and fall into oblivion from a therapeutic point of view. According to estimates, there are 2,000,000 rare disease patients in Italy. There are more than 250 million people known to suffer from rare diseases in the world, and unfortunately 70% of rare disease sufferers are children.

But even if diseases are "orphans", our children are not. They have us.

The association was founded on the initiative of Anna Famà, mother of Riccardo, who suffers from a rare childhood neurodegenerative disease. After many years of research, the cause of this disease was found: a rare mutation in the UBTF gene. The discovery gave a lead and a glimmer of hope, but the medical community is still helpless in its dealing with rare diseases, and research and treatment suffer from insufficient funding and little interest compared to common diseases.

But for parents like Anna, giving up is definitely not an option. To this purpose, the Association Il sorriso negli occhi di Richi was founded. The association promotes interdisciplinary, scientific-medical-technological collaboration, with the idea that a unique disease requires a unique model for this purpose in order to promote the discovery of a cure. We believe that the answers are already there, waiting for us to track them down, and that just as a negative event can happen at any time, so can a miracle!

Fortunately, even the experts agree that something can be done! The best researchers of universities and laboratories Italian and around the world have been deployed to help Riccardo and his friends.

At Il sorriso negli occhi di Richi we work day and night to promote research by creating connections between doctors, scientists and technological innovation, but the time available to our children is short.

Now that something can be done, our real challenge is to raise the financial resources needed to find the "flower with a heart of gold" for Riccardo and other children in his condition, as soon as possible.

Let's change the world with an act of humanity!

The sustainability of our activity depends on the contribution of each donor who allows us to finance research and to give continuity to our commitment to children affected by rare diseases.

0 +

Donations

0 +

5x1000

0 +

Active members

0 +

Years of activity