Pseudoxanthoma elasticum (PXE) is a rare genetic disease affecting 1 in 25.000 individuals, which is characterized by a progressive mineralization on elastic tissues, resulting in changes in the skin, eyes, cardiovascular system and gastrointestinal systems. PXE Italia ODV is the first non-profit organization for PXE patients that was established in Europe since 1998.
Its mission is to help patients and their families to handle the problems that may encounter in the daily life. To achieve this goal PXE Italia ODV:
- creates a network of PXE patients and their families to share their experience
- advocates initiatives that, acting at social, political, medical and scientific levels, constantly broadens the knowledge on PXE, rendering more people aware of this disease
- organizes meetings of patients, physicians and scientists for education and communication on PXE and genetic disorders
- awakens PXE patients and their families to the importance to collaborate with research scientists
- supports the research on PXE
PXE Italia ODV promotes and supports the research on PXE. A number of significant advances have been made in the last decades, but still a lot has to be done. Providing support to the research on PXE, PXE Italia ODV helps patients and their families to hope for a better life. Patients, families, friends, physicians, health professionals, researchers can join PXE Italia ODV and are invited to participate to the activities of the organization.
PXE Italia ODV (formerly PXE Italia Onlus) has been awarded in 2011 by the Regione Emilia Romagna as an exemplary non profit organization for its social health purposes and achievements.