The Proteus Syndrome Foundation (PSF) is a non-profit organization dedicated to improving the lives of individuals with Proteus syndrome, a rare genetic condition characterized by abnormal growth of bones, skin, and head. Through funding AKT1 research and providing family support, the PSF aims to connect patients and their families with medical professionals and resources, offering education and networking opportunities.
With a focus on finding effective treatments for Proteus syndrome, the PSF organizes family conferences, operates a contact registry, and offers grants for families in need of assistance. By bringing together families and professionals, the PSF creates a supportive community where individuals with Proteus syndrome can find information, participate in research, and contribute to the understanding of the condition.
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