National alliance of rare diseases of Macedonia

Founded in May 2014, the National Alliance of Rare Diseases of Macedonia - NARBM actively and tirelessly cooperates with patient associations - members to improve the quality of life of patients and families facing rare diseases, in order to encourage and support health system reforms in the field of rare diseases. country. Our ultimate goal is to improve the quality of life of patients and families facing rare diseases by raising public awareness, exchanging information, protecting human rights, providing support, and advocating for non-discrimination. With the establishment of the alliance in 2014, the first meeting of the Ministry of Health and 16 patient organizations was held, which marked the beginning of an initiative to solve the problem of rare diseases in Macedonia. Together we are committed to the treatment, care and services we need and create solutions to the everyday challenges that come with rare diseases. NARBM is a full member of EURORDIS - European Alliance for Rare Diseases, where it is a member of the Council of National Alliances.

CONTACT

Email: retkibolesti@gmail.com


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National alliance of rare diseases of Macedonia