The Association of citizens for rare diseases Life With Challenges is continuing with the tradition to run at the Skopje Marathon in 2015.
On 10th of May, 60 participants from Skopje Night Running will run for Life With Challenges.
This activity is for raising public awareness regarding rare diseases in Macedonia and about the challenges that people and families with rare disease face in their everyday life.
We are thankful to all that supported us and we are continuing with the cooperation. We hope that we will contribute as an association for the future of people with rare diseases to be a future that they wish for.
In Macedonia this year the Ministry of Health started development of a register for rare diseases, that will include all the patients with rare diseases in Macedonia. For evaluation of the lists of patients from associations, doctors and citizens, there is an expert commission working together with the commission for rare diseases.This registry will help in setting a basis for future plans and strategies regarding provision of treatment and care for patients with rare diseases in Macedonia. With this we will finally have a number of people suffering from a rare disease. It is estimated that the number can reach 1000.
Also in Macedonia this year additional finance was provided for the Program for Rare Diseases at the Ministry of Health through the new law which states that 1 MKD from a pack of cigarettes is going to the fund for rare diseases for provision of evidence based medicines for patients with rare diseases which until now had no refund of therapy, no access to treatment at all.
Some of the needs of the patients with rare diseases until this year were satisfied through the Health Insurance Fund of R. Macedonia and we hope that the cooperation between institutions such as the HIFM, Ministry of Health, Ministry of Labor and Social Politics and Ministry of education will continue further to achieve better quality of life of patients with rare diseases and social inclusion. Medicines are not the only need of the patients, they also need special food, medical devices, physical therapy (sometimes at home conditions) etc.
Rare Diseases are complex and the challenges of the patients are many. The road to better life starts with a diagnosis that can take from couple of months to more than 10 years. The next step is the search for therapy, experts for management of the diseases, education, special needs, … handling stress and emotional problems, managing the new way of life for the patient and for the family … The road of rare diseases is a search for multidisciplinary and integrated approach, it requires cooperation between institutions, patient associations, pharmaceutical industry, medical professionals, academic community …
I believe that every patient with rare disease should step forward with his head high up, just because he is different. Having a rare disease, does not mean having something that is happening very rarely, it means that you have a disease that can happen to anyone at any time, without warning. We, the patients with rare diseases, are people, beautiful people, different from the others .. and that does not make us helpless it makes us brave and stronger than the others.