About We meet the rare diseases
With a number of innovations and technical improvements, the second season of the project We meet the rare Diseases has begun, thanks to the Ohrid activist Gordana Loleska, Super Radio and Association Life with challenges. The main challenge for the team was to raise awareness for people affected by a rare disease, the problems which they and their families face, to the point of maximally adjust legislation and so on.
This year, the project received both an Albanian and a sign language version and will be broadcast in Albania and Kosovo.
At least 400 rare syndromes include hearing loss as a symptom. In order for people with hearing and speech problems, this is a chance to understand the problem of patients with rare diseases. Because of that, this year we decided to implement the project We meet rare diseases in sign language, says project developer Gordana Loleska.
She sends a huge thanks to the Doctors of the Clinic for children diseases who wholeheartedly assisted in the project by reviewing and translating the texts for rare diagnoses, the entire Super Radio team that technically implemented the project, and the media support from numerous media outlets across the country.
The Prime minister for Health Venko Filipce said that the program for treating rare diseases has significantly increased its budget to 520 million denars in 2020.
We continue the program with new drugs for more new diagnoses. An electronic registry of rare diseases has been made and we have a clear idea of how much of the drug is available, where it is and where it can be distributed to patients, said Filipce, who noted that the government remains fully committed to promoting this program for the treatment of rare diseases.
Every day in February, with the educational campaign We Meet the Rare Diseases, we will introduce to one rare disease, the way how it is diagnosed, the treatment and the challenges that people with rare disease face.