The fourth season of the project for introducing the public to rare diseases
From the 1st of next month, the fourth season of activities that they jointly implement starts the associations "Life with Challenges", "It is rare to be rare" and the Ohrid "Super Radio" to inform the public about the rare diseases in the country.
The aim is to raise the voice of the problems faced by people with rare diseases, but also their families.
This year, exactly 111 processed diagnoses are completed to inform the public about rare diseases. Through appropriate texts, videos and audio recordings, in February this year, the public will be introduced to some rare diseases.
The project started in 2019 and is of informative-educational character. Its realization includes renowned professors and doctors from all over the country.
The project also implements the campaign for the Day of Rare Diseases, intended for the general public and relevant institutions, calling on all stakeholders - from patients and families, patient organizations, medical professionals, researchers to the pharmaceutical industry and public health institutions - to engage and become part of the global call for policy makers, researchers, companies and health professionals to engage patients more and more effectively in rare disease research.