The EUROPLAN National Conference took place on 28 February 2018 in Brdo pri Kranju, next to Ljubljana, under the auspices of the President of the Republic of Slovenia, Borut Pahor, and the Minister of Health, Milojka Kolar Celarc.
The Conference was organised by the Rare Disease Association of Slovenia, in cooperation with the Ministry of Health, the Clinical Institute of Medical Genetics, UMC Ljubljana, the Paediatric Clinic in Ljubljana and EURORDIS. It gathered 150 participants from various stakeholders’ groups.
Slovenia has a “Work Plan for the field of rare diseases” adopted in September 2011. The EUROPLAN conference discussed the following areas, assessed achievements and actions remaining to be made:
· European Reference Networks for Rare Diseases
· National contact point for rare diseases
· The aspects of financing treatment of rare diseases in Slovenia
· Rare disease registry
· Screening test
· Ethical aspects of rare diseases
· The legal basis for dealing with rare diseases
· Rare diseases in psychiatry
· Living with a rare diseases
Read more: EUROPLAN Conference Report
State of the Art Report on Rare Diseases / Slovenia: