Thursday September 24th, 2015

Monthly Archives

Exhibition – Lysosomal storage diseases – International Gaucher Day

On 24.09.2015 at Kinoteka – Macedonia, we opened the First travelling regional exhibition of photos with subject – lysosomal storage diseases. This exhibition shows life of patients and their families from Croatia, Serbia, Macedonia and Bosnia and Herzegovina. Lysosomal storage diseases are group of rare diseases that is consisted from more than 45 hereditary metabolic diseases. 

Покана за изложба ЛБН

This project is realized in the frames of the PAL award program (Patient Advocacy Leadership Award), where Genzyme Sanofi Aventis is supporting innovative projects of patient organizations.


With this event, the Association of citizens for rare diseases Life With Challenges is also marking the International Gaucher Day (1st October). This day is marked in more than 40 countries, where member organizations of the European Gaucher Alliance, realize events for patients, families, doctors, researchers …

IGD alb posterIGD mk poster

From Gaucher Diseases, in Macedonia there are 8 patients. The disease is manifested in 3 types, but in Macedonia only Type 1 is present, and the symptoms are spleen and liver enlargement, fragile bones, thrombocytopenia, low hemoglobin levels etc … Until this year, 5 patients were treated on donation program by Genzyme Sanofi Aventis, and 1 through the Program for Rare diseases of the Ministry of Health in Macedonia. From this month, all patients have therapy provided by the Ministry of health. This therapy exists in the world since 1991. With this therapy all symptoms that occur in the years before treatment slowly disappear and the patients can have normal life.

As a Gaucher patient my self, I am thankful for the progress in treatment of patients with Gaucher Diseases in Macedonia. From my diagnosis 23 years ago, I am happy that from now on, the patients will not have to wait so long to be treated and they do not have to be afraid for their future. With early diagnosis, early treatment will now be possible in Macedonia. And with that these patients can lead normal lives as all the other citizens in R. Macedonia. I hope that all patients with rare diseases and other diseases in Macedonia will get the chance to have healthy life. – Vesna Aleksovska, president of Life With Challenges 


From MPS 2 – Hunter Syndrome, there are 2 patients in Macedonia for whom therapy is provided through the Program for Rare diseases at the Ministry of Health since 2009.

From MPS 4 – Morqio Syndrome, there are 2 patients in Macedonia, and their therapy will be provided by the Ministry until the end of this year.


About rare diseases

According to definition, rare diseases are those that occur to less than 5 people in population of 10 000. Although they are rare on their own, together as a group there are 6-7 000 rare diseases in the world and in the EU, 20-30 million people are affected by a rare disease.

Rare diseases are different between each other but the patients and their families face similar difficulties that occur from the rarity of the disease. The problems are many, from diagnosis, to treatment access and social exclusion …

Despite all, the strength, the optimism, and the hope for better tomorrow are the main weapon for the patients and their families in the fight for longer life with better quality. It is to all of us to support them and make their life easier …



Climbing Golem Korab, 2015

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.



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