At the Macedonian Academy of Science and Art on 16th of November, 2013, Life With Challenges participated in the Congress for Rare Diseases of South-East Europe, in organisation of the Research Center for genetic engineering and biotechnology “G.D. Efremov”. Patrons of the congress were the European Academy of pediatrics, MASA and the Doctor Chamber of Macedonia.
At the congress there were representatives from Life With Challenges to present the patient side of rare diseases.
In Macedonia officially in Life With Challenges there are around 60 patients with more than 15 different rare diseases. Only 3 patients are included in the rare disease program at the Ministry of Health for now. As an association we are requiring more patients to be included in the program for rare diseases and it is possible for some of the patients to be treated by the Health Insurance Fund, the Ministry of Labor and Social Policy and the Ministry of Health.
– This is a step forward for rare diseases, but more steps are needed. There are a lot of patients without treatment who are left on their own to deal with their lives, stated Vesna Aleksovska, president of Life With Challenges.
In pediatrics, according to the doctors, except infections, all other rare diseases are rare. Croatia is providing therapy for all patients. In the frames of the Health Insurance Fund in Croatia there is a special fund just for financing orphan drugs.
– More and more drugs are entering that fund. There are issues and there are needs for reforming the system. In Croatia the treatment for all patients is covered by the state, stated D-r Vukashin Andrik from Croatia.
In the world there are 350 million people suffering from 8000 different rare diseases. Rare diseases are public health priority according to the World Health Organization and the European Commission.