Ohrid is again giving a lot of support for rare diseases through different activities in July, 2017.
Beach Run is an event in 5 location near water in Macedonia in July, 2017. On 30.07.2017 was the final race in Ohrid. The teams of NRC nike Run Club Skopje and Ark Lotus Prilep were running for support of rare diseases.
The organization for support of rare diseases was in the very capable hands of Gordana Loleska who showed that everyone can do so much more in support of families with rare diseases.
Also there was support from the paragliding club Fly Ohrid and from the club Aqatica Divono who took the flag of rare diseases sailing.
The program for rare diseases needs to have more financial support so that everyone who needs a medicine can get one through this life saving program. Every family deserves a chance for a better life. If medicine exists for a certin disease, it should be available as soon as possible. For now around 29 medicines are available through the program for around 18 diseases. We will continue as an association of citizens for rare diseases LIFE WITH CHALLENGES to support and fight for patients’ rights. In communication with all relevant institutions we will try to improve quality of life of families facing a life with a rare disease, a life with challenges.