News


MPS II (Hunter Syndrome) from Diagnosis to Treatment


On 20th October, 2017 international seminar MPS II (Hunter Syndrome) from Diagnosis to Treatment took place in Vilnius. During the seminar, physicians have shared their experience in diagnosing and treating Hunter syndrome.   Hunter syndrome is a rare X-linked recessive lysosomal storage disease, caused by deficiency of iduronat-2-sulfatase. Lack of this enzym…



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9th Nordic Baltic MPS meeting


On 3rd October, 2017 9th Nordic Baltic MPS meeting “Managing the MPS patient” took place in Stockholm. The meeting was attended by Rare disease coordinating centre physicians Dovilė Jonuškaitė and Viktoras Sutkus and head of Competence center for surgery of congenital bone deformities Šarūnas Bernotas. The aim of the meeting was to share scientific and …



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5th International Summer School on Rare Disease & Orphan Drug Registries


5th International Summer School on Rare Disease & Orphan Drug Registries took place in Rome (Italy) on 18-20 September. Summer school was attended by Coordinating Centre for Children’s Rare Diseases physician Viktoras Sutkus and administrator Liucija Kanapeckaitė. Summer school was organized by National Centre for Rare Diseases, Istituto Superiore di Sanità (di…



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Spina bifida patient care centre specialists have visited Norway


On 19-21 June, Spina Bifida and Hydrocephalus Association and Children’s Rare Disease Association representatives have visited one of Norway’s rare disease centres TRS National Resource Centre for Rare Disorders (www.sunnaas.no/trs) near Oslo. The hospital was visited by Rūta Ūdraitė-Mikalauskienė, patient representative from Spina Bifida and Hydrocepha…



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16th International Postgraduate Course on Lysosomal Storage Disorders


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…



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Exhibition “Expression of Hope”


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…



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Patients with Spinal muscular atrophy will have to wait for SPINRAZA drug registration in the EU


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…



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Rare Disease Day – News Portals Reports


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…



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Changes in epidermolysis bullosa treatment


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…



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