The Hospital of Lithuanian University of Health Sciences Kauno klinikos (Kauno klinikos) is the largest healthcare institution in Lithuania; it provides multidisciplinary healthcare services for both children and adults, including conservative and surgical treatments. The staff of Kauno klinikos has participated in the development of the Lithuanian National Plan on the Activities Related to Rare Diseases and is actively involved in its implementation.
The Coordinating Center for Rare and Undiagnosed Diseases (CCRUD) at Kauno klinikos was established in 2012 (https://www.kaunoklinikos.lt/contacts/coordinating-center-for-rare-and-undiagnosed-diseases-/). CCRUD takes part in organization and coordination of all activities in the field of rare diseases at the hospital level in order to ensure qualified multidisciplinary healthcare services for patients with suspected or diagnosed rare disorders. The staff of the CCRUD also provides consultations for medical professionals and patients on the logistic issues of healthcare for rare disease patients. Also CCRUD represents Kauno klinikos at national and international level in close collaboration with the Lithuanian University of Health Sciences.
All clinical departments at Kauno klinikos are providing services both for children and adults with rare disorders. This is a tertiary center where most of complicated or undiagnosed cases are being concentrated. In many cases, rare diseases affect multiple organs and are long-lasting; therefore, patients need careful diagnostic work-up, modern treatments and long-term follow-up by competent interdisciplinary teams which are available at Kauno klinikos. For this purpose, 26 functional competence centers for groups of specific rare diseases have been established in accordance with special professional interests and experiences of the dedicated staff. This allows a more structured approach to certain groups of rare diseases in providing multidisciplinary services of comprehensive tertiary level for patients from all around Lithuania and abroad as well as scientific research, education of professionals, patients and community, collaboration at national and international level, etc.
These competence centers are functioning according to the requirements set by European Commission (COUNCIL RECOMMENDATION of 8 June 2009 on an action in the field of rare diseases) and the Lithuanian National Plan on the Activities Related to Rare Diseases. Close collaboration with patient representatives ensures efficient feedback and progress in implementing patient-oriented care. Also, smooth transition of children with rare disorders from childhood to adult healthcare is available due to close collaboration between childhood and adulthood specialists at Kauno klinikos.
Since 2017, Kauno klinikos has received the full membership in the following European Reference Networks (ERNs): EURACAN (European Network for Rare Adult Solid Cancer), Endo-ERN (Rare Endocrine Conditions), ERN-EYE (Rare Eye Diseases), ERN-SKIN (Rare Skin Diseases). In 2022 Kauno klinikos has received the full membership in the European Reference Network ERN RARE LIVER (Rare Liver Diseases).
In 2019, affiliated ERN partnerships have been received in additional 8 ERNs: ERN RITA (Primary Immunodeficiency, Autoinflammatory and Autoimmune Diseases), ERN LUNG (Rare Respiratory Diseases), ERN BOND (Bone Rare Diseases), ERN GUARD HEART (Rare and Low Prevalence Complex Diseases of the Heart), ERN ERNICA (Rare Inherited and Congenital (digestive and gastrointestinal) Anomalies), ERN EpiCARE (Rare and Complex Epilepsies), ERN EURO-NMD (Rare neuromuscular diseases), ERN ReCONNET (Rare and Complex Connective Tissue and Musculoskeletal Diseases). ERN memberships have opened new opportunities for progress in the field of rare diseases.
Kauno klinikos has been registered as a partner of ORPHANET. It also takes part in the EU collaborative project “Towards access to at least 1 million sequenced genomes in the EU by 2022“. International Rare Disease Day is being celebrated annually by organizing a conference for medical professionals and patients, supported by broad campaign on rare diseases via different media sources, including the EURORDIS website.
Diagnostic and treatment possibilities of rare genetic, metabolic and autoimmune disorders are expanding within the recent years at Kauno klinikos. The international collaboration predisposes further development of healthcare provision for patients with rare diseases and of the scientific research. The staff of Kauno klinikos is open to any professional cooperation in this field of priority.
Center of Rare and Undiagnosed Diseases Kauno klinikos