Campaign to support patients with rare diseases
To draw the attention of decision-makers and the wider public to the critical situation in the treatment of patients with rare diseases, a campaign was implemented in 2024 in cooperation with the Association of International Research-Based Pharmaceutical Manufacturers (SIFFA), the Latvian Alliance for Rare Diseases, and the Latvian Association of Rare Disease Specialists (RSSA).
Given that Latvia significantly lags behind other European Union countries in access to innovative medicines, and that many patients are unable to receive the treatment they need, the primary objective of the campaign was to draw attention to the urgent need for additional funding to enable the inclusion of new medicines in the national reimbursement list. The campaign also highlighted the Rare Disease Plan for 2023–2025, approved by the Cabinet of Ministers, which to date remains largely a theoretical policy document, insufficiently implemented and failing to deliver practical solutions that meet the real needs of patients.
The campaign reached its culmination in the autumn with a symbolic event held outside the Parliament, where public readings from the diary “Silent Fighters: Notes from Patients with Rare Diseases” took place. The event featured patients’ personal stories and lived experiences, shedding light on the everyday realities and challenges faced by people living with rare diseases. Following the readings, 100 copies of the diary were presented to members of Parliament, as well as to the President of Latvia, the Prime Minister, the Minister of Health, and other key decision-makers, with the aim of fostering understanding and calling for immediate action. This initiative marked the starting point for broader communication on rare disease funding issues in 2025.
Proactive communication throughout the year ensured that the issue remained on the media agenda while simultaneously increasing pressure on policymakers. A broad and carefully planned communications campaign was implemented, generating significant resonance and resulting in extensive coverage across multiple media channels, including online news portals, television, radio, and print media. This visibility helped draw greater public attention to the issue and reinforced its importance among decision-makers.
