Coordinating Centre for Children’s Rare Diseases

Coordinating Centre for Children‘s Rare Diseases in Children‘s Hospital, Affiliate of Vilnius University Hospital Santariskiu Klinikos began its work on 4th September, 2012.

Coordinating Centre for Children‘s Rare Diseases aim to improve, plan and provide medical, psychological and other needed support for children with rare diseases; to promote and support specialists training by gathering and spreading scientific knowledge about rare diseases.

The goal of the centre is to help children with rare diseases to:

  • Get diagnosed quickly and accurately.
  • Receive appropriate and affordable treatmet.
  • Receive personalised and optimal care.

In achieving these goals, the centre cooperates with various specialists and separate competence centers, where patients are sent to be examined by skilled specialists.

To aid competence centers, Coordinating Centre for children‘s Rare Diseases:

  • Coordinates consultations by various specialists, so they could examine the patient on the same visit, organises consultations with many specialists.
  • Attemps to improve accessibility of expensive treatment, medical devices and tests.
  • Organises preparation of diagnostic and treatment recommendations of rare diseases and educational materials, promotes the use of new diagnostic and treatment methods for rare diseases.
  • Coordinates and organises teaeching of patients with rare diseases and their relatives
  • Cooperates with national and international institutions, rare diseases expert centres, patient organisations.
  • Cooperates with Ministry of Health of the Republic of Lithuania in preparing the legal base related to rare diseases.
  • Helps in transfering the patients from children to adult center after they reach adulthood.

Often, a lot of time passes from disease suspicion to diagnosis and appropriate treatment; patients and their relatives are consulted by many physicians, many tests are performed and many diagnoses are set. Specialists at Coordinating Centre for Children‘s Rare Diseases try to make the rare disease identifiable to save time and effort of both patients and physicians.


Head of the centre prof. Rimantė Čerkauskienė

Administrator Liucija Kanapeckaitė

Doctors Dovilė Jonuškaitė and Viktoras Sutkus

Doctor Geneticist Birutė Burnytė