The president of North Macedonia
The president posted a picture for RDD with his family in support of rare disease families and they also illuminated their house in RDD colors.
More than 600 families live with a rare disease in our country. We need to help them by cooperating and support them in their requests for a better quality of life.
Pothuajse 600 persona në vend jetojnë me ndonjë sëmundje të rrallë.
Bashkëpunimi midis nesh të gjithëve është i rëndësishëm që t’i ndihmojmë për një jetë më të mirë. Të japim dorën dhe të dëshmojmë se nuk janë vetë.
Government of North Macedonia
The Prime Minsiter Zoran Zaev and the Minister of Health Venko Filipche, had a meeting with the associations for rare diseases. They stated that for rare diseases we need a systematic approach and they will continue to increase the number of available medicines for rare diseases. In 2017 the budget for rare diseases was 213 million MKD, today it is 527 million MKD.
Further the plan is to adopt a national strategy for rare diseases which will mean progress in the laws according to the EU regulatives for rare diseases and it will support the education of medical professionals in our country.
Minister of health of North Macedonia, Venko Filpche Венко Филипче
People with rare diseases are not alone. The ministry of health is always open to hear about the problems and to follow the new approach and access to treatment and care. With the increase of the budget, we increased the treatment for different diagnoses. In 3 years we managed to get 9 new medicines and there are 560 patients in the registry developed by the commission for rare diseases. With the national strategy for rare diseases, we will continue to improve the lives of families with rare diseases. #ShowYourRareShowYouCare#РеткиСме
The First Lady of North Macedonia, Ms Elizabeta Gjorgievska
Our First Lady organized an expert discussion for improvement of health and social services for families with rare diseases, together with doctors, researchers, psychologists, and ministry representatives.
Patients with rare diseases and their families are example for courage and hope. We have a lot of work to do, so that we can offer equity in social and health care for them.
This is not something we need to do only for RDD, every day we need to advocate for a systemic approach to treatment, care, and diagnosis. We should not allow rare diseases to be marginalized and isolated. They have the potential to contribute to our society and we need to give them a chance to participate in the improvement of health and social care.
Minister of labor and social policy, Ms Jagoda Shapapaska
For RDD I want to say that the life of people with rare diseases and their families whould not be defined by their diseases. Social reform should offer systemic support for people with rare diseases. As a ministry for labor and social policy we have 2 priorities:
– Provision of quality social protection and services for people with rare diseases and their families
– development and practice of holistic approach in the treatment of people for rare diseases and support for their families.
Rare but not invisible