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 practical knowledge in treating patients with MPS II (Hunter syndrome).


The meeting was chaired by Karin Naess from Karolinska University Hospital and Arvid Heiberg from Oslo University Hospital. The meeting began with participant countries representatives presenting their patients and national treatment strategies.

Afterwards, dr. Christina Lampe from HSK Dr. Horst-Schmidt-Kliniken, Germany has given a review on Hunter syndrome treatment news, currently developed treatment methods and specific MPS II treatment aspects: carpal tunnel syndrome treatment, general anesthesia problems, spinal cord compression, patient care at home and transition to adult physicians.

“Shire” representative David Whiteman has given more information about infusion reactions and drug neutralizing antibodies.


The meeting concluded with a discussion on when to start and stop enzyme replacement therapy (idursulfase, brand name Elaprase) and presentation on Hunter Outcome Survey news.