Life With Challenges continues the tratidion of climbing Korab. On 3th of September, 2017 the association KORAB set the flag of rare diseases on the top of the highest mountain in Macedonia, Korab.
Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES:
After the registry for rare diseases started development in 2015, in 2016 there were 30 drugs procured for around 18 rare diseases. There is still a need for different drugs for new patients and new diseases. At the moment we are asking for drugs for Familial Amyloid Polyneuropathy, for Spinal Muscular Atrophy, Pulmonary Fibrosis, Muscular Dystrophy Duchene, Mielodysplastic Syndrome and others. We are still waiting on an answer about special bandages for Epidermolisis Bulossa fro the Health Insurance Fund. And we are in contact with the ministry of Social politics about personal assistants for people with ALS and other similar conditions.
We expect that the Minister of Health will have understanding for the needs of the families with rare diseases, for the necessary treatment that is needed for a normal life. We believe that the promises about therapy not being late will be realized, because a lot of patients were facing problems with not getting therapy for more than 1 month. набават. We hope to cooperate together, all of us, associations, and institutions so that we can improve quality of life of people with rare diseases. Patients can not wait for politicians to decide for their life, therapy should be procured on time, the health system should work in favor of patients. The Ministry of finance has to find a way to finance the Program for rare diseases in a way that all patients can get necessary treatment. Patients should not beg or ask donations, no matter what kind of disease they are facing.
This is a symbolic activity for raising public awareness about rare diseases in Macedonia, about the challenges that families face in their every day life. We are thankful to Ljuubomir Kotevski, president of Korab who accepted and supported this idea from the beginning.
We continue to fight further for people with rare diseases. We hope to contribute so that the future is a future that people with rare diseases want to have.
