The association of citizens for rare diseases LIFE WITH CHALLENGES continues with the tradition to participate on Skopje Marathon. This year the association Moment Plus from Gevgelija is also participating in the marathon.
On 8th of May, 2016, 60 participants from Skopje Night Running will run for Life With Challenges on 21 and 42 kilometers, and also there will be additional participants running for Moment Plus on 5 kilometers. The voice of rare diseases is stronger when we are together.
This activity is for raising public awareness about rare diseases in Macedonia, emphasizing the challenges that people with rare diseases and their families face in every day life. We are thankful to all that support us until today and we will continue with the cooperation further. We hope to contribute for a better future for people with rare diseases as an association. .
Statement – Vesna Aleksovska, President of Life With Challenges
„Rare diseases are complex and to resolve the problems and the challenges that people with rare diseases face every day we all need to work together: the associations, the patients, the institutions, the health professionals, the pharmaceutical industry, researchers and other stakeholders … only with mutual work and good communication we can provide better quality of life.
With the development of the register for rare diseases and the increase of the financial resources for procurement of medicines in the program for rare diseases, and also financial resources for diagnosis and education, the Ministry of Health made significant steps toward improving life of patients with rare diseases. We will continue with communication with the insitutions and hope to provide other benefits for the patients as procurement of special orthopedic devices and needed social services and care for patients that do not have available medicines at this point. Each patient deserves a chance for better life. Also I have to mention that rare cancers are still not taken care of, and the institutions need to make steps to care for these patients that at this point have no innovative medicines that are used in Europe and in our neighbor Balkan countries. “
Statement – Iskra Dimitar and Tomislav from Skopje Night Running Изјава –
Skopje Night Running as an initiative for raising awareness for recreational running is joining to support the fight for better quality of life for patients with rare diseases. Through our initiative for recreational running we supported different causes and it is our pleasure to give support to Life With Challenges for a second year in a row.
Statement – Gjurgjica Kjaeva, President of Moment Plus – Association for pulmonary Hypertension
„The World Day of Pulmonary Hyperteension is a gloabl campaign from the World association for PH for raising public awareness about his disease. PH is a diseases of the lungs and the heart. The World day of PH is being marked with events in whole Europe on 5th of May.
Breath of Success is a campaign marking positive stories from patients that live with this disease and it is encouraging people to share their hopes and dreams. It is really important to get early diagnosis and early treatment. We hope that in future the patients in Macedonia will have more available medicines and better therapy so that they can have better quality of life.“
The event is realized in cooperation with:
Skopje Night Running, Skopje Marathon
The event was supported from:
Genzyme – SAnofi Aventis, Celgene International, PH Europe