What positive changes have happened for people with HAE, in your country, from 2012 to now?
- The Rare Disease Program was launched, within which HAE patients from Macedonia received medications in 2015.
- A Register of Rare Diseases, which included HAE patients, was developed.
- The Committee for Rare Diseases started to function regularly and the process of including new patients in the Registry has become more dynamic.
- The Alliance of Rare Diseases was formed, with HAE Macedonia being a founding member.
- A Strategy for Rare Diseases was developed, which envisaged improvement of patients’ rights and the quality of their life.
- Relations with government officials have improved. They started manifesting greater alertness to the needs of HAE, and in general, rare disease patients.
- Public awareness was raised, doctors were educated throughout the country and new patients were diagnosed.
- Mechanisms have been put in place to significantly improve diagnostics, and diagnostic tests that were previously only available privately are now available to potential patients within the public insurance system.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The greatest achievement for people with HAE in the Republic of Northern Macedonia is access to therapy; three different types of medication.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
- Bringing all patients with rare diseases together, around the same table, to prepare a Rare Disease Strategy. The Rare Diseases Strategy envisages improved access to medicines and improved living conditions.
- Creating a picture book for children with HAE – The Rare Boy and the Talkative Balloon. The picture book helped raise awareness on HAE among the youngsters in North Macedonia. Several countries in the South Eastern Europe region expressed their interest to translate and publish the picture book in their respective languages.
- A puppet show was developed, based on the picture book The Rare Boy and the Talkative Balloon and a Children’s Workshop was organized for HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
HAE Macedonia is constantly in consultation with the regional patient representative for South Eastern Europe (SEE) region – Natasa Angeleska, who is always available and provides comprehensive assistance and support. HAE Macedonia also uses several resources from HAEi, such as HAEi Connect, we provided the translation in Macedonian for the HAEi Emergency Card and we use the HAEi platform for website hosting.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
- Providing prophylactic treatments for patients who need it.
- Opening an ACARE Center, where patients could come for periodic examinations and consultations with Dr. Vesna Grivceva Panovska – an HAE expert.
- Decentralization of access to medicines – spreading the distribution of medicines to cities where there are HAE patients. Providing better information to primary care physicians in smaller towns, who take care of HAE patients, on the specifics of HAE and the needs of patients with this disease. Improved communication and collaboration between HAE patients and their primary care physicians.