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Volume 04 Journal of Clinical Infectious Diseases & Practice
ISSN: 2476-213X Rare Diseases Congress 2019
June 17-18, 2019
conferenceseries.com
June 17-18, 2019 | Berlin, Germany
9th World Congress on
Rare Diseases and Orphan Drugs
Page 20
Vesna Aleksovska, J Clin Infect Dis Pract 2019, Volume 04
Humanitarian aid in the frames of International Gaucher Alliance
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.
We have helped these Patients in 2014 and 2015 We have helped these Patients in 2016 and 2017 (48)
Biography
Vesna Aleksovska has 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 patient in R. Macedonia. She is also a co-founder and former President of the National Alliance for Rare Diseases of R. Macedonia
from 2014. She is now in the Board of NARDM and also in the Board of the Alliance of Patient Organizations of Macedonia. In 2013, she became a Member of
the DITA (Drug Information, Transparency and Access) Task Force EURORDIS (European Organization for Rare Diseases) and a Vice Chair and Director in
the Board of Directors of the International Gaucher Alliance since 2014. She is also a EUPATI (European Patients Academy on Therapeutic Innovation) Fellow,
Trainer and EUPATI Ambassador for Macedonia.
Vesna Aleksovska
International Gaucher Alliance, Macedonia