The Coordinating Center for Rare and Undiagnosed Diseases (CCRUD) at the Hospital of Lithuanian University of Health Sciences Kauno klinikos (Hospital) has been established in 2012 when the Hospital was nominated as one of the two tertiary centres in Lithuania responsible for the implementation of the Lithuanian National Plan on the Activities Related to Rare Diseases, developed according to the requirements set by European Commission (COUNCIL RECOMMENDATION of 8 June 2009 on an action in the field of rare diseases). The Hospital has been registered as a partner of ORPHANET.
CCRUD takes part in organizing 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 fo the CCRUD provides consultations for medical professionals and patients on the organizational issues of healthcare for rare disease patients (contacts are provided on the Hospital website). CCRUD functions in close collaboration with Lithuanian University of Health Sciences, also represents the Hospital at national and international level.
All clinical departments at the Hospital are providing services for children or adults with rare disorders as this a tertiary centre where most of complicated or undiagnosed cases are concentrated. In addition, 21 functional centers for groups of specific rare diseases have been established in accordance with special interests and experiences of the dedicated Hospital staff. This allows a more structured approach to certain groups of rare diseases in providing comprehensive multidisplinary care, scientific research, education of professionals, patients and community, collaboration at national and international level, etc. Six rare disease centres take care of pediatric rare diseases, eight centres deal with adult patients, and the rest seven cover both pediatric and adult patient populations. Close collaboration between pediatric and adult specialists allows smooth transition of childen with rare disorders from childhood to adult healthcare.
Five centres for specific rare diseases have been nominated as national reference centers for rare ophthalmological, dermatological, endocrine, neurosurgical, and gastroenterological disorders.
In 2017, Hospital of Lithuanian University of Health Sciences Kauno klinikos received European Reference Network membership in four different medical networks: EURACAN (European Network for Rare Adult Solid Cancer, representing nervous system tumours), Endo-ERN (European Reference Network on Rare Endocrine Conditions), ERN-EYE (Rare Eye Diseases), ERN-SKIN (Rare and Undiagnosed Skin Diseases). Preparations for membership application in the field of rare hepatic diseases are on the way.
Hospital of Lithuanian University of Health Sciences Kauno klinikos is represented at the national level by its specialists in different rare-disease-related regular commissions (Coordination Commission related to the implementation of the National plan on Activities Related to Rare Diseases, Commission on Reimbursement of Treatment for Very Rare Diseases) and working groups (e.g., legislation on treatment reimbursement for certain rare diseases, rehabilitation, handicap status, etc.)
Collaboration with different patient organisations is taking place, by organizing common activities (conferences, disease-specific days, publications). In collaboration with a non-governmental Association of children with rare disorders, consultations for families of children with rare disorders have been implemented at the Hospital. International Rare Disease Day is being celebrated every year by organizing a conference for medical professionals and patients, supported by broad campaign on rare diseases via different media sources. The information on this event is always announced in the EURORDIS website, and the EURORDIS-provided video clip translated to Lithuanian is spread around.
Information on rare diseases for patients, families and professionals is provided in the Patient portal or on the websites of specific Hospital-based rare disease centres (in Lithuanian).
The expanding diagnostic possibilities of rare genetic, metabolic and autoimmune disorders at the Hospital level within the recent years, also the expanding possibilities of international collaboration predispose further development of healthcare provision for patients with rare diseases and of the scientific research. We are open to any professional cooperation in this field of priority.
HEAD OF THE COORDINATING CENTER FOR RARE AND UNDIAGNOSED DISEASES
Prof. Milda ENDZINIENĖ
Phone: +370 37 326811
Phone: +370 677 42046
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Rare Disease Centers:
- Center of Rare Ophthalmological Diseases
- Center for Rare Cardiovascular Diseases
- Rare Endocrine Diseases Center
- Rare Neurosurgical Diseases Center
- Hemophilia and Coagulopathies Center
- Rare Gastrointestinal and Liver Diseases Centre
- Phakomatosis Centre
- Primary Immunodeficiency Center
- Center of Neuroendocrine Tumors
- Pulmonary Hypertension Center
- Adult Cystic Fibrosis Center
- Sarcoma Center
- Pediatric Oncology and Hematology Centre
- Centre for Neuromuscular Disorders
- Centre of Pediatric Chronic Respiratory Diseases
- Children‘s Continence Center
- Rare Skin Diseases Centre
- Children‘s Chronic and Rare Kidney Diseases Center
- Children‘s Cardiology Rheumatology Center for Rare Diseases
- Rare Kidney Disease Center
- Head and Neck Cancer Center
- Severe Asthma Center