Vesna founded the Association of citizens for rare diseases “Life With Challenges”– Bitola in 2009. She is a Gaucher patient and patient advocate for rare disease patients in the Republic of North Macedonia. She also co-founded the National Alliance for Rare Diseases of Macedonia in 2014. In 2013 she became a member of the DITA (Drug Information, Transparency and Access) Task Force EURORDIS and she is still a member and volunteer in this group. From 2019 she is also a member of the Rare 2030 Foresight in Rare Disease Policy panel of experts, made up of nearly 200 key opinion leaders in rare disease policy. She is a EUPATI fellow and trainer from the first cohort of patients in 2014.
Vesna Aleksovska has a background in journalism, non-government sector, project management and business consulting and 12 years of experience in patient organizations and advocating for patients’ rights. She founded the Association of citizens for rare diseases “LIFE WITH CHALLENGES” – Bitola in 2009.
She is a Gaucher patient and patient advocate for rare disease patients in the Republic of North Macedonia. Aleksovska is also co –founder and former President of the National Alliance for Rare Diseases of the Republic of North Macedonia from 2014. She is now in the board of NARDM and in the board of the Alliance of Patient Organizations of the Republic of North Macedonia.
From 2013 to 2022 she was a member of the DITA (Drug Information, Transparency and Access) Task Force EURORDIS (European Organization for Rare Diseases). She is also EUPATI (European Patients Academy on Therapeutic Innovation) fellow and trainer since 2015. Vesna is also took part in the
experts’ group of Rare 2030.
She was a director in the board of directors of the International Gaucher Alliance (IGA) since 2014 to 2021. In 2019 (to 2021) she became the Chair of the IGA. In December 2021, she became a projects officer in IGA and now, since 2023 she is in the IGA’s Developmental Programme working with volunteers and Gaucher Leaders from all over the globe.
Vesna works in the field of advocacy and lobbying for rights of the rare disease patients in
the Republic of North Macedonia, through cooperation and communication with
organizations and institutions (government and non-government) on national and international level.
She is also a freelance trainer and consultant in personal and professional development (motivation, communication, organisation, coordination, project cycle management, team building, public relations, etc.) and capacity building of organisations. She has a certificate for Master NLP trainer, and she is getting her certificate for NLP coach next year. She communicates in English, Macedonian, Serbo-Croatian and Spanish.
Vesna believes that through strengthening patients and raising public awareness about rare
diseases the world can become a better place to live in, for patients and families that face
life filled with challenges. Being a patient advocate for her means building future for
families with rare diseases.
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