16th International Postgraduate Course on Lysosomal Storage Disorders took place on 7th-10th of June, 2017 in Nierstein, Germany. Course was attended by a physician from Coordinating Centre for Children’s Rare Diseases, Viktoras Sutkus. Lectures in the course were read by famous lecturers, specialists of rare lysosomal diseases – Michael Beck, Roberto Giuglia…
Third European Reference Networks conference took place in Vilnius on 9 – 10 March, 2017. It was dedicated to present recently established European Reference Networks aimed at improving patient care. European Reference Networks activities, laws defining such activities and integration of the networks into national healthcare systems were discussed. The confer…
To celebrate World Rare Disease Day, on 7th March, Coordinating Centre for Children’s Rare Diseases and Sanofi Genzyme have opened an art, drawings and photography exhibition, artworks for which were provided by people with rare diseases from all across the world (Romania, UK, Australia, USA, Taiwan, Belgium, Venesuela, Poland, Peru, Columbia, China, Isreal, Nether…
On 23rd February Children Head of Coordinating Centre for Children’s Rare Diseases assoc. prof. Rimantė Čerkauskienė, Coordinator of Competence center for pediatric neuromuscular disorders Jurgita Grikinienė and Coordinating Centre for Children’s Rare Diseases doctor Dovilė Jonuškaitė attended a videoconference about possibilities of providing SPINRAZA for Lithuani…
Many news about rare diseases have been posted in Lithuanian news portals during Rare Disease Day [In Lithuanian]: Information about Europe Reference Networks Delfi LRT Doctors suggest to expand newborn screening and test for more diseaeslrytas Ministry of Health is urged to invest into more detailed newborn screening 15MIN Kauno diena On rare disease day – a…
Coordinating Centre for Children’s Rare Diseases together with Dermatovenerology Centre of Vilnius University Hospital Santariskiu Klinikos have prepared Epidermolysis bullosa diagnostics and treatment protocol. This protocol will facilitate patient care and acquisition of needed medicines and supplies for children affected with Epidermolysis bullosa. Epider…
International scientific conference Research Brings Hope to People Living with Rare Disease is organized on March 17th, 2017 in Vilnius. Topic of the conference – Lysosomal storage diseases and Lipid metabolism disorders. Lectures will be read by famous physicians and scientists from Lithuania and other European countries. You can register for the conf…
