Our aims
Progeria is one of the rarest diseases in the world and is in fact an orphan disease, which finds no interest in being studied due to the low number of people affected.
Our Association strives to support people affected by Progeria and to support the search for a cure. A.I.Pro.Sa.B.'s mission can be broken down into the following objectives:
Raising funds for research
The road to a definitive cure for Progeria passes through the funding of scientific research aimed at discovering and clarifying the molecular and physiological mechanisms linked to the disease. For the past 20 years, thanks to the contributions of our supporters, there have been a series of discoveries that bring us ever closer to a cure. All this has been possible thanks to the many different initiatives of many people who, through events and fundraising, have financed research.
Currently, mainly research in Italy and research in the United States (PRF) is funded.
To find out how you can support our association, please visit the page how to support us.
Implementing correct and accurate scientific dissemination
High-level scientific dissemination is very important when it comes to rare diseases and is a priority for our association. For many years now, A.I.Pro.Sa.B. has been recognised as one of the main sources of scientific information on Progeria, which can be used by individual researchers or other patients, up to the general public. In particular, the association is committed to sharing the peculiarities associated with Progeria, detailing the effects of the disease and what it means in the daily lives of patients. The correct dissemination is also aimed at emphasising the importance of scientific research and the commitment of all doctors and researchers working on the cure. It is not uncommon for research on progeria to be of great benefit to other studies on, among other things, cancer, inflammation, cardiovascular problems and the mechanisms of normal human ageing.
Fostering collaboration between doctors and researchers
In all these years of activity, the association has been able to relate to many researchers and doctors from all parts of the world. Fostering collaboration between them and putting them in contact with the many people we have met along the way is one of the fastest ways to advance research into progeria.
Support for families with children affected by progeria
The need to support families and people living with Progeria stems from the experience of Sammy, Laura and Amerigo, who found themselves alone, lacking support and in the absence of the most basic information to cope with the disease.
The main objective of our association is to follow families during their living with Progeria by sharing knowledge, experiences and the best advice for managing the contingency of life with this disease. In addition, A.I.Pro.Sa.B. is the main interface through which individual patients can be put in contact with specialist medical and research teams. In addition to purely medical-logistical support, the association is dedicated to fraternal support among families and networking among patients, both in Italy and worldwide.
Being high-profile interlocutors to address the Institutions
Since its inception as an association, A.I.Pro.Sa.B. has been among the only organisations in the world committed to talking to patients' families and supporting research and scientific dissemination. In this context, the association represents an important point of reference for the institutions on issues related to Progeria: from discussions on the approval of drugs, to the rights of people with disabilities, to the allocation of funds for research, to the granting of authorisations for foreign patients to their health treatment. While maintaining a non-partisan spirit, A.I.Pro.Sa.B. aims to be a worthy representative of patients and of the scientific community related to progeria, as well as to provide valuable support for Italian, European and foreign institutions in dealing with issues related to this disease.
