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Saatja: "Luize Līce - Tane" <[email protected]> Saaja: "Info - SOM" <[email protected]> Teema: Request for written input - rare disease policy in Estonia Kuupäev: 2026-02-16 20:45 Tähelepanu! Tegemist on välisvõrgust saabunud kirjaga. Tundmatu saatja korral palume linke ja faile mitte avada. To the Ministry of Social Affairs of Estonia, I am writing on behalf of the analytics and advisory group “PowerHouse Latvia” to request written input for a cross-country analysis on rare disease policy and implementation. We are examining how rare disease policy is organised and implemented in Estonia, with the aim of identifying practical lessons that may be relevant for Latvia. This work follows the publication of our study on rare diseases in Latvia and responds to policymakers’ interest in transferable international approaches. We would appreciate the Ministry’s written responses to the questions below; any direct quotation or attribution in the final output will be agreed with you in advance (anonymous attribution is possible, if preferred). Written questions: 1. Policy framework: What are the main national strategies/plans and responsible bodies for rare diseases in Estonia? Which regulations, procedures, or formal mechanisms are most important for implementation? 2. Implementation in practice: How does the rare disease framework operate in practice (coordination, patient pathway, cooperation with clinical centres and other stakeholders)? What currently works well, and what are the main bottlenecks? 3. Stakeholders and cooperation: Who are the key actors involved (public authorities, payer bodies, clinical centres, patient and professional organisations), and how is coordination organised? 4. Transferable approaches: Which approaches in Estonia could be relevant for other countries to learn from? What conditions were required to establish them (funding, organisational changes, procedures, political decisions)? 5. Additional context: Are there any recent or upcoming policy changes, reforms, or debates that significantly affect the rare disease field? If possible, we would appreciate receiving your response by 27th of February. Kind regards, Luīze Līce - Tane Project manager Analytics and advisory group “PowerHouse Latvia” www.powerhouselatvia.com