Stockholm Craniofacial Center (SCC) is an all encompassing multidisciplinary organisation for craniofacial disease manifestation. SCC is an expert team within the Karolinska Center for Rare Diseases (KCRD). Care and research is organized via SCC for all specialities centralized around each craniofacial patient group. The basis for organization of care is value based care principles that are currently being implemented and Karolinska is a strategic partner with the ICHOM consortium. A specialized nurse coordinates craniofacial care, a specialized nurse coordinates cleft care and a research nurse coordinates research. Expertise included within SCC are: plastic surgery, neurosurgery, ENT, orthodontics, genetics, neurology, intensive care specialists, childrens anesthesiology, radiology, psychiatry, psychology, speech & language therapy, oral surgery, pediatric and adult ventilation specialists. Patient organisations are an important and active part both for SCC and KCRD.
The craniofacial volumes at a group level are the largest in the country, excluding specifically craniosynostoses where the Gotheburg center historically has the largest volumes. The infrastructure and facilities at Karolinska are state of the art. Referrals both nationally and internationally have allowed for significant experience in treating diagnoses indicated in 7. Importantly Karolinska's close research collaboration between surgical specialities and clinical genetics has allowed for identification of 7 novel mutations with craniofacial implications in the last 5 years and we hope to contribute and expand such research efforts further with ERN network partners.