Saatja: Heli Paluste - SOM </O=EXCHANGELABS/OU=EXCHANGE ADMINISTRATIVE GROUP (FYDIBOHF23SPDLT)/CN=RECIPIENTS/CN=E0101C55CA7242C4BFFE8FB4C5BB8008-69C124D1-58>
Saaja: 'Luize Līce - Tane'
Teema: RE: Request for written input - rare disease policy in Estonia
To the analytics and advisory group “PowerHouse Latvia”
Dear colleagues,
Thank you for the e-mail.
In Estonia, most of the treatment of rare diseases is financed by the Estonian Health Insurance Fund, if the corresponding services and medicines are in the list of services and medicines financed by the Health Insurance Fund. The prerequisite for financing the treatment is the decision of the attending physician, in some cases the Health Insurance Fund price list also contains specifying or limiting conditions for the use of the medicine. The process of how new medicines and services are assessed in advance before being added to the aforementioned list is regulated by legislation.
Despite financial difficulties, 2-3 new medicines for rare diseases are added to the Health Insurance Fund list for reimbursement every year.
To a lesser extent, the treatment of rare diseases is also financed by charity, especially for those medicines and treatment methods that are novel and not yet reimbursable from public money (Health Insurance Fund).
In the last two years, a targeted allocation of 4-5 million euros has been allocated from the state budget to improve the availability of treatment for rare diseases, which supports the treatment of cases that are novel and not yet reimbursable by the Health Insurance Fund. This allocation also supports the provision of supportive services for patients and families, travel abroad for treatment, and other measures to support families. The money reaches families through charitable foundations that deal with rare diseases.
This additional allocation is still rather temporary in nature and the plan is to amend the law so that the process of evaluating innovative medicines and adding them to the Health Insurance Fund list would be more flexible and faster and would take into account the needs of this target group with rare diseases.
I hope that these explanations are helpful to you.
Please find also some useful links regarding you questions below
Main national strategies – National Health Plan Rahvastiku tervise arengukava 2020-2030 <https://www.sm.ee/sites/default/files/documents/2023-03/National%20Health%20Plan%202020-2030.pdf> development plan for rare diseases Microsoft Word - HARVIKHAIGUSTE ARENGUKAVA (5.03.2014) <https://www.sm.ee/sites/default/files/content-editors/eesmargid_ja_tegevused/Tervis/Tervishoiususteem/harvikhaiguste_arengukava_ee.pdf> ,
Implementation in practice: Rare Diseases Competence Center of the University of Tartu Hospital Harvikhaiguste kompetensikeskus - Geneetika ja personaalmeditsiini kliinik <https://www.kliinikum.ee/geneetika/kolleegile/harvikhaiguste-kompetensikeskus/>
Best regards,
Heli Paluste MD
Health Policy Expert
[email protected]
Ministry of Social Affairs of Estonia
Suur-Ameerika 1
10122 Tallinn
www.sm.ee <https://www.sm.ee/>
From: Luize Līce - Tane <
[email protected]>
Sent: Monday, February 16, 2026 10:46 PM
To: Info - SOM <
[email protected]>
Subject: Request for written input - rare disease policy in Estonia
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 <http://www.powerhouselatvia.com>