On 3rd of June, on Ohird Running, rare diseases were present as 50 people were running for raising awareness about rare diseases. The message is clear – we want timely and free diagnosis, we want access to innovative medicines, we want access to appropriate care, we want a better life!
This activity was organized by Gordana Loleska, a member and activist of LIFE WITH CHALLENGES. Also we had support with the municipality of Ohrid.
This event was a promotional and there were a few races going on during the day, some professional and some recreational.
Statement, Gordana Loleska, activist of LIFE WITH CHALLENGES
„On this marathon we have professional running for rare diseases, but also parents and patients themselves are running for better life. The citizens of Ohrid supported our cause and contributet towards raising awareness about the problems of people with rare diseases. We also have the Minister for Health, Venko Filipce, running for us and the Minister for finance – Dragan Tevdovski, also we had the state secretary for external affairs – Viktor Dimovski.”
Statement, Vesna Aleksovska, president of LIFE WITH CHALLENGES
„Gordana is one of our most active members, and she organized many events for raising awareness on rare diseases. This is one of those events where we share with the media our problems.
Rare families help and support each other, as we are aware of the burden of the rare disease that we have to care for the rest of our lives. There are some steps towards improvement of care and treatment. In 2009 the minister Bujar Osmani was the one who made a separate program for rare diseases. In 2015 the Minister Nikola Todorov added finance to the program and 30 new medicines were provided for 18 diagnosis. He also started the registry for rare diseases. In 2018, the Minister Venko Filipce added 3 new drugs, and we are expecting more until the end of the year. He also started to transform the registry into an electronic one for easier use.
We all deserve better health system and health services. As an association we will continue to cooperate with other organizations and institutions towards long term solutions for better health care, treatment and services.“
The event was organized in cooperation with:
Охрид трчаТ – Ohrid Running
Our activity is supported by:
Genzyme Sanofi Aventis, Celgene International, Pfizer, Hoffman La Roche, Biomarin, Medis, Novartis, Municipality of Ohrid.