Karolinska Centre for Rare Diseases (KCRD)
In order to improve care for patients with rare diseases, especially patients with polyhandicap an innovative solution is under development; ”KCRD-RARE clinic” - a one-stop shop multidisciplinary outpatient clinic with specialist and general care for the diagnosis and treatment of patients with rare diseases of all ages.
Our goal is that this will lead to improved healthcare with coordinated care chains, establishment of a rare disease quality registry, and increased patient empowerment. The clinic would facilitate research about phenotypes and treatments of known rare diseases. The clinic would also serve as a tremendous training body for doctors and other categories of staff by collecting many rare patients in one place. The holistic approach for treatment combined with modern digital solutions could be used by other more common disease groups in the future.