Subject: Question regarding the treatment of rare disease
From: <[email-masked]>
To: "Info - SOM" <[email-masked]>
Date: Tue, 4 Nov 2025 11:23:56 +0200

Tähelepanu! Tegemist on välisvõrgust saabunud kirjaga.
Tundmatu saatja korral palume linke ja faile mitte avada.

Dear Mr., Ms.,

The National Assembly of the Republic of Slovenia is preparing a comparative 
analysis of the treatment of rare diseases in various Member States of the 
European Union, including Estonia. Currently, as part of the legislative 
process, a broad discussion is underway in Slovenia regarding the creation 
of a special fund for the treatment of rare diseases, which would be 
intended for individuals with rare diseases.

That is why we are interested in how the treatment of rare diseases for 
individuals is carried out in Estonia, namely, who are the beneficiaries of 
receiving funds (patients, treatment providers, intermediaries) for 
treatment, to what extent the treatment of an individual patient is financed 
and how are the beneficiaries of the aforementioned funds determined? Are 
the funds for covering the treatment of rare diseases provided within the 
framework of health insurance funds or within other budget items? In 
addition to the above, we are interested in whether any initiative has been 
made in the past to establish a special fund for financing the treatment of 
rare diseases.

We thank you in advance for your answers, as they will be of great help to 
us in understanding in more detail the situation in Estonia.

Best regards,

Aldijana Ahmetović

Raziskovalni oddelek
Šubičeva 4, 1000 Ljubljana, Slovenija | T:+386 1 478 9429 | E: 
<mailto:[email-masked]> [email-masked] | Splet: 
<http://www.dz-rs.si/> www.dz-rs.si

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