APERTCRAS

Together, we do more than endure: we move forward, advocate for our rights, and build the future.”



APERTCRAS is the Spanish National Association for Apert Syndrome and other Syndromic Craniosynostoses. Founded by families affected by these rare conditions, the organisation provides support, advocacy, awareness activities, and promotes research to improve the quality of life of affected individuals and their families.

Today, APERTCRAS supports 65 affected member families and 27 partner members across Spain. The association plays an important role in connecting families, professionals, and researchers, strengthening the voice of the cranio community at national level.



The representative of the APERTCRAS network within ERN CRANIO is Dr. Katiuska Carolina Rosas Soto, Pediatric Neurosurgeon and mother of a child with Crouzon syndrome. She brings a unique combination of professional expertise and lived experience to the network.



We are also pleased to highlight APERTCRAS’ online presence, where they continue to share updates, stories, and awareness activities.