In 2014 with cooperation of the University of Michigan, Dpt. of Rheumatology, NORA conducted a pioneering study of the perceptions and experiences of patients with Rheumatic, Musculoskeletal and Autoimmune Diseases (RMDs). For the purpose of the study, a quantitative research survey of 200 patients with rheumatoid arthritis (RA) was made. Based on the results, we came to the conclusion that lack of medicines and education about the medicines is one of the unmet patient need. Patients in Macedonia have very limited access to medicines, resources and poor understanding of the medicines. This makes successful treatment more challenging as uninformed patients have difficulty following protocol, understanding how the medicine works and confidence in the treatment. Currently the only available means of education regarding their treatment is the medicine’s package inserts, which eventually leads to a hearsay information and gives an overall negative picture regarding the treatments and medicines.
Based on these findings we approached the International League of Associations for Rheumatology (ILAR), with a project proposal named “First literature in Macedonian language for patient education on medicines in Rheumatology (RMDs)”. Our aim is to create a pocket size handbook on various groups of medicines used for treatment of RMDs as well as on physical therapy and lifestyle.
The ILAR Executive Committee gave us exceptional scores, and we were selected to receive funding of $13,900 for 2015, for printing 10.000 pocket size handbooks to be disseminated for free to patients with RMDs. With this funding we will be able to produce first such literature published in the Macedonian language, that will help patients understand and navigate the complex range of medicines in this field.
One additional reason for winning the grant was the ability for NORA to successfully disseminate this material. NORA is the first and only health NGO in Macedonia that developed a nationwide printed material dissemination chain of 10 information and education boards installed in the largest public health institutions around the country.Category: Member News