The Association of citizens for rare diseases LIFE WITH CHALLENGES is continuing the tradition of climbing the highest mountain top in Macedonia – Golem Korab in 2015.
For 8th of September, the Independence day of R. Macedonia, traditionally the Association Korab organized the Climbing of Golem Kkorab, the highest mountain top in Macedonia. The flag of Life With Challenges was on the top together with the flag of Korab.
This activity is for raising public awareness about rare diseases in Macedonia and about the challenges that families face in their every day life, living with a rare disease. We are thankful to the president of Korab, Ljubomir Kotevski, that supported this idea with an open heart.
Through the program for rare diseases at the Ministry of Health, 21 medicines for rare diseases are already being supplied: Wilson Diseases, Gaucher Diseases, Tyrosinemia, Juvenile Arthritis, Hereditary Angioedema, Tuberous Sclerosis, PKU, ALS, Factor 13, Pulmonary Hypertension and we expect medicines for MPS 4 also. For MPS 2 medicines are already supplied in the past 5 years. We also expect this program to become bigger and to get more medicines for other rare diseases. The registry of patients with rare diseases is being developed and with registration of new patients, new medicines should be supplied. We should not forget that medicines are not the only thing needed for better quality of life. Many patients need orthopedic devices, special food and many social services. We are thankful that the Ministry of Health started resolving the problems of families with rare diseases and we hope that further steps will follow from the institutions to support better quality of life of patients with rare diseases. – Vesna Aleksovska, President of Life With Challenges.
At this moment, Life With Challenges is conducting research on rare diseases in cooperation with Studiorum and with support of other organizations and institutions. The goal is to pin point the policies and practices in the field of rare diseases in Macedonia and the quality of life of the patients. The results of this research together with recommendations will be promoted on Rare Disease Day, 2016.
As an association we hope that our continuous educational activities and activities for raising public awareness will contribute towards finding new ways to better support and help families that face rare diseases and cooperate with institutions to overcome the challenges.