World Rare Disease Day marked in Sarajevo

Under this year's global slogan "Day by day, hand in hand", the XY Association, for the third year in a row, in cooperation with user associations, marked World Rare Disease Day with an organized street event in Sarajevo, reports the Patria News Agency.

As part of the event, a symbolic signing of the declaration "I respect the human rights of people suffering from rare diseases" was organized by imprinting a palm print on the installed declaration.

The declaration was signed, thus showing support for people suffering from rare diseases, by numerous public figures from Bosnia and Herzegovina: Dario Vučić, director of the Opera of the National Theatre in Sarajevo, Dalal Midhat-Talakić, singer, Fuad Backović-Deen, singer, Sanela Krsmanović, actress, and Samir Avdić, former basketball player of KK "Bosna" and the BiH national team, followed by employees and volunteers of the XY Association, and citizens.

Members of the XY Association and user associations also provided citizens with more information about rare diseases, the position of patients as a neglected category of citizens in our society, the difficulties they face, and the importance of respecting the human rights of people suffering from rare diseases.

Rare diseases are defined as diseases that affect fewer than 5 individuals per 10,000 population. Although rare, considering the large number of rare diseases (between 6,000 and 7,000 different diagnoses), we arrive at the figure that in Europe, about 6-8% of the total population suffers from rare diseases.

During 2013/2014, the XY Association implemented the project "Contribution of Civil Society Organizations to Improving the Position of People Suffering from Rare Diseases in BiH", funded by the European Union within the Instrument for Pre-Accession Assistance (IPA 2012).

During the implementation of the project, which represented pioneering steps towards improving the status of patients with rare diseases, the XY Association, in cooperation with the Federal Ministry of Health and the Ministry of Health and Social Welfare of Republika Srpska, developed a Study on Rare Diseases in BiH, and established a strategic framework for improving healthcare for people suffering from rare diseases in BiH, through the created and adopted Strategy for Rare Diseases of the Federation of BiH / Program for Rare Diseases of Republika Srpska. Also, within the project, the capacities of the members of the Coalition of Health Organizations (KOZ) were built.

The future activities of the XY Association will be focused on advocating for the creation of a registry of rare diseases and a registry of patients with rare diseases in BiH, as well as reducing stigma and discrimination against patients with rare diseases.

The marking of World Rare Disease Day was initiated in 2008 by the European Organisation for Rare Diseases (EURORDIS), when associations of patients with various rare diseases in numerous European countries participated in a massive campaign to raise awareness among European citizens about the presence and position of people suffering from rare diseases. The success achieved that day prompted the regular organization of World Rare Disease Day on the last day of February.

This political moment precisely prompted more active advocacy for the rights of people suffering from rare diseases and contributed to the improvement and adoption of national strategies and policies on rare diseases in numerous European countries, including BiH. The campaign began as a European project, joined by the United States in 2009, and by 2012, the number of countries that joined it reached 63.