Subject: Request for written input - rare disease policy in Estonia
From: Luize Līce - Tane <[email-masked]>
To: "Info - SOM" <[email-masked]>
Date: Mon, 16 Feb 2026 22:45:45 +0200

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