About National Alliance for Rare Diseases of R. Macedonia
In Macedonia, Rare Disease Day celebrations began in 2012, as organized by the patient organization “Life with Challenges”. Since then, activities have included open events engaging the general public (in shopping malls, open public spaces), round table discussions, workshops, press conferences etc. After the 2014 initiative for creating an Alliance for rare diseases in Macedonia, the 2015 Rare Disease Day was the first one organized jointly by 13 organizations – members of the National alliance. The day was marked with a cocktail event and photo exhibition, aiming to raise awareness of the Macedonian public, as well as relevant authorities, about the challenges faced by people living with rare diseases.
NARDM, the National Alliance for Rare Diseases of Macedonia, was founded in 2014 and is based in Skopje. With its foundation, the first meeting between the Ministry of Health and 16 organizations for rare diseases took place, starting the initiative for solving the problem of financing the treatment for rare diseases in Macedonia. Building on that, the first patient registry was developed for the first time, and with the adoption of the new law in 2015 stating that “1 MKD from each pack of cigarettes will go to the treatment of rare diseases” it is for the first time ever that more than 100 patients with 12 different diagnoses are now able to get their medicine from the stat. Today, members of the Alliance are 13 organizations, including patient organizations that represent more than 50 different rare diseases in Macedonia, as well as organizations working in the field of patient rights and patient policy-development, or motivation of people with disabilities. The Alliance has initiated the development of a National Strategy for Rare Diseases and now works on advocating for its adoption. NARDM is open for new members that follow the same vision – providing best possible quality of life for people that face life with a rare disease.