From Natasha Jovanovska Popovska, President, HAE North Macedonia

1. A representative of HAE Macedonia, Verche Jovanovska Jankovska, visited the President of the Republic of North Macedonia, Godana Siljanovska Davkova, on behalf of the National Rare Disease Alliance. Through an emotional conversation, Verche, alongside several other members of the National Rare Disease Alliance, discussed the challenges faced by rare disease patients in Macedonia with the President of North Macedonia.

The meeting began with the presentation of a handwritten letter from the brother of a patient with a rare disease and special needs, he had asked the President of North Macedonia to help his brother. The difficulties that rare disease patients face in their daily lives were discussed at the meeting, alongside the challenges in the social and educational systems, the stigmatization they face every day, and the inaccessibility of patients with special needs. The battles that these patients have won in North Macedonia and the battles that lie ahead were also discussed.

At the meeting, Verche Jovanovska Jankovska shared the story of a nine-year-old child with Hereditary Angioedema who once suffered a stomach attack, but after receiving the treatment, he managed to run a marathon and was declared the hero of the day. The President stated that it was unacceptable to discuss these battles only once a year on Rare Disease Day – February 28 – and suggested that patients with rare diseases should fight even more vehemently but also be united to achieve their goals and increase their visibility.

Possible solutions and approaches were also discussed, such as the National Rare Disease Strategy, which calls for systemic solutions for rare disease patients, guarantees of access to education, social services, employment opportunities, and decent work, which will certainly result in a discussion in Parliament. At the meeting, which lasted over 2 hours, the President stated that she would give the rare disease patients her unwavering support everywhere.

2. HAE Macedonia representative Jovan Jankovski, as a member of the National Rare Disease Alliance, attended a meeting initiated by the Rare Disease Committee, which marked a rare occasion for patient representatives to be invited to such a meeting.

The meeting was to determine guidelines and directions for the cooperation between the Rare Disease Committee and the National Rare Disease Alliance. The importance of improved and faster diagnosis of rare diseases was highlighted. It was agreed that a meeting would be held in the period from 28-30.04.2025 to adopt a rare disease strategy.

The strategy would include 3 segments: Health (Ministry of Health and the Rare Disease Committee), education, and social segment.
Additionally, there was talk about unifying and accelerating the procedures for receiving therapy from hospitals.

3. HAE Macedonia representative Natasha Jovanovska Popovska, on behalf of the National Rare Disease Alliance of North Macedonia, as well as Aleksandar Petrovski, also from the National Alliance, met Žaklina Peševska, an MP of the Republic of North Macedonia and President of the Equal Opportunities Committee, as well as Lidija Petkoska, an MP at the Assembly of the Republic of Macedonia.

The purpose of the meeting at the National Parliament was the initiative by the National Rare Disease Alliance to get the UN Resolution on Addressing the Challenges of People Living with Rare Diseases and Their Families ratified. The Resolution was adopted in December 2021, with a consensus of 193 member states. The meeting discussed the technical aspects and steps for ratification of this important document, which would become a foundation for adopting the National Rare Disease Strategy of the Republic of North Macedonia. In addition, the MPs expressed interest in joining the National Alliance of Rare Diseases of Macedonia (NARBM) campaign to raise awareness about rare diseases during the celebration of Rare Disease Day.

MPs Žaklina Peševska and Lidija Petkoska had the opportunity to learn about the challenges that patients with rare diseases face every day, but also about the successes of some of the NARBM representatives in fighting for appropriate therapy for the patients they advocate for, as well as achieving success internationally.