The EUROPLAN National Conference took place on 10 November 2017 in Skopje, Republic of Macedonia. The National Alliance for Rare Diseases of the Republic of Macedonia was the organiser.
The conference discussed the necessity to design, adopt and implement a National Plan for Rare Diseases (RD) in order to provide a legal framework that will include the EU definition for rare diseases, increase the visibility of rare disease patients in the healthcare system, put in place a national RD patient registry as well as measures for prevention, early diagnosis, designating multidisciplinary care centres and improve access to treatments.
A draft plan is currently being developed but still needs to be revised. It could take into account for instance, the best practices in place in the Balkan region and other European countries. The Prior consultations with all stakeholders and conclusions of the conference, including proposed solutions from the patients’ perspective, constitute a solid foundation for moving further towards the revision of the draft plan with relevant institutions.
Read more: EUROPLAN Conference Report