Rare Disease Forum 2026 in Latvia

The Rare Disease Forum 2026 took place on 27 February in Latvia, one day before International Rare Disease Day, marking the third consecutive year of this educational event. The forum brought together a wide range of stakeholders, including healthcare professionals, patient organization representatives, policymakers, people living with rare diseases, and their families. This year, the forum reached a new level by becoming an international event, welcoming experts from across Europe.

The forum was held in a hybrid format at Rīga Stradiņš University, with both in-person participation and live streaming available to a broader audience. It formed part of a wider Rare Disease Month initiative in Latvia, aimed at raising awareness under the campaign message “Rare, but many! 100,000 reasons to act!”.

The program consisted of two main parts: an educational section and parallel working sessions. During the educational program, both local and international experts shared knowledge and experience on key developments in the field of rare diseases, including national policy implementation, European collaboration, patient advocacy, and research and innovation.

The second part of the forum focused on interactive working sessions, where participants engaged in discussions and exchange of experience. Three main thematic areas were addressed. The first focused on access to treatment for rare disease patients, highlighting challenges related to limited availability of therapies and insufficient funding at both national and European levels. The second session explored habilitation, with particular attention to children with rare diseases, their developmental needs, therapy options, and cooperation with families. The third session examined the role of patient organizations, including patient engagement, representation, and the transfer of international experience.

Participants actively contributed to discussions, jointly identifying practical solutions, sharing best practices, and strengthening collaboration both within Latvia and across Europe. The forum provided an important platform for knowledge exchange, networking, and fostering a more coordinated approach to rare disease care and policy development.

At the Rare Disease Forum 2026, a representative of ERN-ITHACA, Anne Hugon, participated as a speaker and delivered a presentation on partnership building in the field of rare diseases. She highlighted the importance of collaboration between European Reference Networks, innovation initiatives, and patient organisations, with a particular focus on strengthening cooperation within ERN and fostering engagement with patient associations across Europe.

Overall, the Rare Disease Forum 2026 successfully contributed to increasing awareness, enhancing professional knowledge, and promoting collaboration among all stakeholders involved in the rare disease field.