Vesna Aleksovska
International Gaucher Alliance, Macedonia
Title: Humanitarian aid in the frames of International Gaucher Alliance Vesna Aleksovska
Biography
Biography: Vesna Aleksovska
Abstract
The vision of IGA is-A world where all Gaucher patients have access to the treatment and care they need and there is a possibility of a cure. IGA has the mission to be the global voice for Gaucher patients and their families; to empower its members to advocate on behalf of Gaucher patients to ensure that the Gaucher research agenda is focused on patients’ unmet needs to take collective action to address challenges Gaucher patients worldwide face in accessing early diagnosis and optimal treatment and care. In the field of humanitarian aid IGA has achieved a lot with the following activities: Contact to affected patients and families; Working with the Pharma Companies e.g. Shire’s Global Steering Group, Pfizer, Genzyme; Building infrastructure i.e. Jordan; Early diagnosis working with the industry; Cooperation with physicians and scientists; Influence on EWGGD and research.