From Natasha Jovanovska Popovska, President, HAE North Macedonia

From Awareness to Action: HAE Macedonia Driving Rare Disease Advocacy in North Macedonia

In 2026, HAE Macedonia played an active role—through its engagement within the National Alliance for Rare Diseases (NARBM)—in shaping a series of impactful Rare Disease Day activities that combined awareness, storytelling, and policy advocacy.

The programme included a press conference and public forum in Skopje, where key national stakeholders came together to discuss the needs, challenges, and progress related to rare diseases in the country. Among those addressing the audience were Zlate Stojanovski, President of the Rare Disease Committee; Rashela Mizrahi, Chair of the Parliamentary Committee on Health; and Sasho Klekovski, Director of the Health Insurance Fund.

During the event, patient organisations issued a clear call to action—urging Azir Aliu, Minister of Health, to engage in dialogue on sustainable funding for the Rare Disease Programme and to ensure that decision-making processes are conducted in partnership with patient communities. Additional calls were directed to the Government of the Republic of North Macedonia to adopt a National Strategy for Rare Diseases, and to the Assembly of the Republic of North Macedonia to strengthen legislative frameworks, including the regulation of orphan medicines and the protection of patients’ rights in line with international standards.

Complementing this policy-focused engagement, Rare Disease Day activities also created space for human connection and visibility. Through the “Human Library” event, patients and families shared personal stories in an open and supportive environment, transforming lived experiences into a powerful tool for awareness and empathy. By placing real voices at the center, the initiative reinforced the importance of visibility and understanding in addressing the everyday realities of living with a rare condition.

This message was further amplified through a national video campaign, which invited individuals living with rare diseases—and their caregivers—to present themselves beyond their diagnosis. Participants shared aspects of their daily lives, including their professions, studies, hobbies, and interests, highlighting that they are not defined solely by their condition but are active and engaged members of society. Notably, the campaign also included an HAE patient making her first public appearance, speaking about her condition—an important and courageous step that underscored the power of visibility and personal storytelling.

Together, these three initiatives formed a cohesive advocacy approach—linking personal storytelling with public awareness and institutional dialogue. Through its active involvement, HAE Macedonia contributed to ensuring that people living with rare diseases are not seen as a burden, but as individuals entitled to equitable access to healthcare, education, and social services.

By bridging voices, visibility, and policy, these efforts demonstrate how coordinated action at the national level can drive meaningful change for the rare disease community.

North Macedonia Contributes to the 2026 Global Angioedema Leadership Conference

North Macedonia was actively represented at the 2026 Global Angioedema Leadership Conference, held from 27–29 March in Madrid, Spain, and organized by HAE International (HAEi).

Three representatives—Verce Jovanovska Jankovska, Natasa Angjeleska, and Natasha Jovanovska Popovska—took active roles in panel discussions and workshops, sharing experiences and highlighting the progress made in strengthening HAE advocacy and patient support at the national level.

The delegation was further strengthened by the participation of physicians from the Clinic for Dermatovenereology and the University Clinic for Children’s Diseases, alongside patients from North Macedonia, whose presence and perspectives helped tailor a more complete and unified national story.

Together, the contributions reflected a collaborative approach—bringing together patients, clinicians, and advocates to exchange knowledge, share practical experiences, and learn from global peers.