Ohrid is running again in support of rare diseases. On 8th September, 2017 the Independence Day of R. Macedonia the International Athletic Marathon started in Ohrid.
The organization of the teams for rare diseases was in the capable hands of our volunteer Gordana Loleska, a mother who showed that a lot can be done for raising awareness on rare diseases.
The Minister of finance Mr Dragan Tevdovski, participated in the Marathon in support of rare diseases.
Statement, Gordana Loleska, volunteer of LIFE WITH CHALLENGES:
Ohrid showed that is together with people facing rare diseases. Again we are spreading the message: People with rare diseases, you are not invisible, we are your voice!
Statement, Vesna Aleksovska, President of LIFE WITH CHALLENGES:
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.
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 are thankful for the support from TAMARO markets that were running in the marathon for rare diseases and to the club from Struga and students from Ohrid, as to the athletic clubs from Ohrid.