The Association of citizens for rare diseases LIFE WITH CHALLENGES continues with the tradition and this year is participating at Skopje Marathon together with the group Skopje Night Running. The motto as the previous years is Running for better life.
On 6th of May, 40 participants on 21 and 42 kilometers will run for rare diseases. Our voice is stronger when we are together.
This activity is dedicated for raising awareness on rare diseases in R. Macedonia. Families with rare diseases face different challenges in their everyday life. We are thankful to everyone who supported this activity from 2013 onward. We hope to further contribute towards the future of people with rare diseases.
Statement: Vesna Aleksovska, President of LIFE WITH CAHALLEGNES
„After the start of the registry for rare diseases and the increase of finance for provision of drugs for rare diseases in 2015, we had around 30 medicines supplied for over 18 diagnosis. The Minister of Health Venko Filipce, this year on rare disease day promised 3 new medicines and he kept the promise as we can see form the new tender for rare diseases that is ongoing at the moment.
There is still a need for medicines for newly registered patients and new medicines such as for Pulmonary Fibrosis, Juvenile Arthritis and other rheumatological diseases, Becker and Duchene Muscular Distrophy. We also have a request for oral therapy for Gaucher diseases as it will improve quality of life of patients who can transfer from infusion every 2 weeks on a pill every day.
From the Health Insurance Fund we still expect refund for special bandages for Epidermosilis Bulosa that were promised in 2016 in February.
We are also very concerned regarding diagnosis.In the past 2 months we had 3 cases (a baby of 4 months, a child of 10 years and an adult) with difficulties to get the diagnosis. Although they had tests in Macedonia for different diagnosis nothing was confirmed. To get tests in other countries it costs from 500 to 5000 EUR depending on the tests needed. Refund is not available for diagnosis in Macedonia. Although the HIF promised to get a new regulative about this nothing is happening. Without a diagnosis life is very difficult since you have no idea what are you fighting with and how to treat and manage the disease.
The association will continue to communicate with the institutions to ensure that in future there will be appropriate health and social services for the families that face life with rare diseases. Every person deserves a chance for better life. Only together we can improve all of our lives.“