President Gordana Siljanovska-Davkova spoke with representatives of the National Alliance for Rare Diseases of the Republic of Macedonia – NARBM: Rebeka Jankovska Risteski from the “Give Us Wings” Association, Verce Jovanovska Jankovska from the “HAE Macedonia” Association, Aleksandar Petrovski from “RAST” Association and Simona Jovevska from the “STOP SMA” Association.
The talks focused on the challenges that people living with a rare disease face every day. The interlocutors informed the President that as a result of the work done so far, they have achieved therapy for all patients whose disease has a cure.
However, as they pointed out, numerous barriers in education and in the social sphere remain unresolved. People with a rare disease, as they said, lack multi-system support – access to education, employment opportunities and decent work, inclusion in all streams of society. They say, people with rare diseases do not want to be just patients, but want to be useful and contribute to the community.
The President pointed out that it is unacceptable to talk about these people and their problems only once a year, on February 28 –International Day of Rare Diseases. Therefore, she believes, people with rare diseases should and must be more radical to increase their visibility. In order to be perceived as a factor that must be taken into account, it is necessary to act together.
Institutions, on the other hand, the President said, must be more attentive and understanding of what people living with a rare disease need. “That is inclusiveness, let us accept that these people express their abilities in a slightly different way”, the President pointed out.
Possible solutions that emerged from the conversation include creation of a National Strategy for Rare Diseases that will incorporate systemic solutions and guarantees for access to education, social services, employment opportunities and decent work, which will be the result of a discussion in the Parliament, being the home of democracy.
In the shortage of personal assistants, the interlocutors see a solution in volunteering. The case of the United States was cited as an example. Namely, children in high schools, as a result of classes dedicated to volunteering, receive points that then affect their grades.
Representatives of the National Alliance for Rare Diseases also demand introduction of neonatal, i.e. screening of babies as soon as they are born, as a tool for detecting certain rare diseases.
Emphasizing that people with rare diseases will always have her support, at the emotional meeting, the President stressed that these people must not be left alone.
The National Alliance for Rare Diseases unites 15 associations of citizens and individuals. Its activities are aimed at improving the quality of life of families and patients facing rare diseases.
