Persona Foundation

As parents facing the challenges of a rare genetic disease, we understand how crucial it is to support families like ours. That is why we established our foundation, which aims not only to search for a cure but also to create a strong community for all affected by rare diseases. Our Goals 1. Research and Coordination of Scientific Teams Our top priority is to collaborate with leading specialists and research institutions to accelerate progress in research on rare genetic diseases. We work to coordinate teams of scientists, enabling them to exchange knowledge and experiences, thus increasing the chances of discovering effective treatment methods. 2. Support for Families with Disabled Children We understand the immense challenges faced by families with children experiencing disabilities. Our foundation offers support in the form of counseling, information, and access to resources that help improve daily functioning and enhance quality of life. We believe every family deserves comprehensive support and understanding. 3. Public Education Education about rare genetic diseases is essential for building awareness and empathy in society. We organize workshops, conferences, and informational campaigns aimed at increasing knowledge about rare diseases, their effects, and how to support individuals affected by these issues. We want rare diseases to cease being a taboo subject and for their understanding to become widespread. We are convinced that our collective engagement in these activities will bring real changes not only in the lives of those affected by rare diseases but also in society as a whole. Together, we can build a better future!