On 9 November, 2019 physicians Dovilė Kalibatienė and Viktoras Sutkus from the Children’s Rare Disease Coordination Center participated in the event of the Association of Children’s Rare Diseases and Spina Bifida and Hydrocephalus Association. The main discussion topics were: emerging challenges, working together to find new solutions to old problems. P…
On 3-5 November, 2019 training course on mucopolysaccharidoses took place in Budapest, Hungary. This event was attended by the Children’s Hospital physicians: orthopedic surgeon Š. Bernotas, an otolaryngologist M. Polianskis and Vilnius University Hospital Santaros Klinikos cardiologist dr. Egidija Rinkūnienė.
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On 4th October, 2019 Meeting of the Competence Center for Lysosomal Storage Diseases took place in Vilnius. The meeting was attended by professionals from various fields of Vilnius University Hospital Santaros Klinikos. Santaros Klinikos is a member of the European reference network MetabERN, which also covers the treatment of lysosomal storage diseases. The presen…
A joint seminar of Lithuanian and Japanese scientists, organized by the Ministry of Health (MoH) and the Japanese Agency for Medical Research and Development (AMED) was held in Vilnius on 23-24 September, 2019. During the seminar, researchers shared their experiences on research into rare and undiagnosed diseases, cancer and the potential of biomedical resources. G…
European Reference Networks (ERN) have released an animation clip, which explains how ERNs can help in diagnosing and treating rare diseases.
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CPMS (clinical patient management system) and ECP (ERN collaborative platform) training took place on 13th February in Santariškių str. 2. This system was presented by two ERN TransplantChild representatives from The La Paz University Hospital, Madrid: Belén López and Juan de Torres. CPMS is ERN platform, used to discuss a specific patient case. Experienced healthc…
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…
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 …
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…
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…
