Continuous and comprehensive care can increase the quality of life of people with rare diseases and ensure health care

Continuous and comprehensive care can increase the quality of life of people with rare diseases and ensure health care

BANJA LUKA, July 18 (FENA) – A meeting of the Supervisory Board on the project “Contribution of CSO networks to improving the everyday lives of people living with rare diseases” funded by the European Union and implemented by the XY Association, composed of representatives of entity ministries of health, health professionals, and associations working in the field of rare diseases was held last week in Banja Luka. The results of project activities implemented in the past six months were presented at the meeting, and the activities whose implementation is planned for the end of 2021 were also discussed.

The role of the Supervisory Board is to supervise the implementation of the project and provide strategic leadership to ensure the achievement of the project goal in the best possible way, which is to strengthen the networks of civil society organizations and their capacities.

The Supervisory Board consists of the President of the Cystic Fibrosis Association of Bosnia and Herzegovina Elvira Muhić, Dr. Marina Bera from the FBiH Ministry of Health, Dr. Milan Latinović from the RS Ministry of Health and Social Welfare, Dr. Jasminka Vučković from the Solidarity Fund for Diagnosis and Treatment of Diseases, Conditions, and injury of children abroad RS and Dr. Mensuda Hasanhodžić expert for rare diseases from the University Clinical Center Tuzla.

Multisectoral and inter-institutional cooperation in the health field of both entities, involvement of associations, exchange of information, and examples of good practice are the purpose of future Supervisory Board meetings because only continuous and comprehensive care for people with rare diseases can raise the quality of life of people with rare diseases.

According to the president of the Cystic Fibrosis Association of Bosnia and Herzegovina and member of the Supervisory Board Elvira Muhić, this association actively participates in the implementation of the project “Contribution of CSO networks to improving the everyday lives of people living with rare diseases” whose results they believe will be useful to end-users.

“The exchange of information between service users from different cantons at the level of the Federation of BiH is the first thing that will be enabled through this project, and which is invaluable for us. Also, the identification of associations in Bosnia and Herzegovina and the systematization of information on their capacities and work will now be available in one place and there will be synchronization in their joint activities,” said Muhić.

During the meeting, they also talked about the establishment of the Alliance for Rare Diseases at the level of the Federation of Bosnia and Herzegovina.

“The establishment of the Association for Rare Diseases at the level of the Federation of Bosnia and Herzegovina, which is planned within this project, will greatly help the users of the association, mostly because sometimes there are only a few people with certain rare diseases, sometimes even one or two, and they do not have the opportunity to form an independent association either at the cantonal level, let alone at an even higher level. The project will help to direct people with rare diseases to the right place and not to neglected them in the health care system, and the Supervisory Board will play a major role in the whole process, providing support within the system,” concluded Muhić.