In 2026, International Rare Disease Day in Latvia will expand into a full Rare Disease Month, featuring a nationwide awareness campaign under the slogan “Rare, but Many! 100,000 Reasons to Act!” and culminating in the Rare Disease Forum 2026 on 27 February. While individual diagnoses are rare, there are more than 6,000 identified rare diseases worldwide, affecting around 300 million people. In Latvia alone, the actual number of people living with rare diseases could exceed 100,000, highlighting significant challenges such as delayed diagnosis, limited access to specialists, and gaps between urgent needs and available support.

The Rare Disease Forum 2026 will convene distinguished Latvian and international experts in the field. The programme will feature leading Latvian rare disease medical specialists, alongside Ariane Weinman from EURORDIS, who will explore the diversity of national rare disease plans across Europe. Birutė Tumienė, representing the ERDERA project, will present the physicians’ perspective on the diversity of national plans, as well as their implementation and measurable outcomes. Associate Professor Madara Auzenbaha — a participant in the JARDIN project — will speak about European Reference Networks and their role in strengthening cross-border collaboration in rare diseases. The programme will also include contributions from other international and Latvian specialists, ensuring a broad and forward-looking discussion on rare disease policy and practice.

The forum is organised by the Latvian Rare Disease Alliance in cooperation with the Children’s Clinical University Hospital Rare Disease Coordination Centre and academic partners, aiming to provide education, foster networking, and encourage dialogue among healthcare professionals, patients, caregivers, and policymakers.

Access the Forum programme here.