04.01.2024 nr 10.1-13/8-1
Riina Sikkut
Terviseminister
Sotsiaalministeerium
Austatud minister
Edastame Teile Euroopa Majandus- ja Sotsiaalkomitee TEN sektsiooni president Baiba
Miltoviča 22.12.2023 kirja nr (SG.B.2_TEN)(2023)D/3246.
(conclusion of the conference "Rare Diseases and European Reference Networks")
Lugupidamisega
Aivo Orav
Alaline esindaja
Lisa: kiri 2 lk
Raili Lillemets ,
[email protected]
Rue Guimard 11/13 1040 Brussels Tel: +32 2 227 39 10
[email protected] https://eu.mfa.ee
TEN – TRANSPORT, ENERGY, INFRASTRUCTURE AND THE INFORMATION
SOCIETY
The President
Brussels, 22 December 2023
(SG.B.2_TEN)(2023)D/3246
Ms Riina SIKKUT
Minister of Health
Suur-Ameerika 1,
10122 Tallinn
ESTONIA
Dear Minister,
The European Economic and Social Committee (EESC), in cooperation with the Spanish Presidency of the
Council of the EU, held a major conference on "Rare Diseases and European Reference Networks" in Bilbao
on 11 October 2023 to take stock of what has been achieved and address some of the main challenges facing
the EU policy framework on rare diseases and European reference networks (ERNs).
I am very pleased that the EESC brought together European, national and local civil society organisations and,
more specifically, patients' associations with some of the EU's best professionals and researchers, as well as
national and local authorities and representatives of the EU institutions.
The conference responded to both the call for action issued by the Czech presidency of the Council of the EU
and the political priority of the previous trio of presidencies. The conference sought to ensure continuity in
terms of the work and political commitments of EU Member States and EU institutions since 2004, given that
in recent years the EU has implemented a range of measures spanning various policy areas and providing a
comprehensive approach to rare diseases.
The conclusions of the conference and the side event will be circulated to all participants, the European
Parliament and the health ministries of the EU Member States. They will be specifically forwarded to the
upcoming Belgian Presidency of the Council of the EU, which has already undertaken to enhance the well-
being of individuals affected by rare diseases, as well as to the Hungarian Presidency as part of the current
trio.
Information about the conference is available on the event's web page: reports, photos, presentations,
recordings and press coverage with the conclusions of the event, which will also be published in French,
German and Spanish in January 2024.
Rue Belliard/Belliardstraat 99 | 1040 Bruxelles/Brussel | BELGIQUE/BELGIË
Contact: Beatriz PORRES| +32 25469131 |
[email protected]
www.eesc.europa.eu @EU_EESC www.eesc.europa.eu/facebook/ www.eesc.europa.eu/linkedin/ social.network.europa.eu/@EESC
It is my sincere wish that this event will be followed by many other projects where we can find European
solutions to improve the quality of life of patients and their families through a comprehensive EU strategy on
rare diseases.
Yours sincerely,
Baiba MILTOVICA
Encl.:
− Conclusions and recommendations of the Conference on Rare diseases and European Reference
Networks
Rue Belliard/Belliardstraat 99 | 1040 Bruxelles/Brussel | BELGIQUE/BELGIË
Contact: Beatriz PORRES| +32 25469131 |
[email protected]
www.eesc.europa.eu @EU_EESC www.eesc.europa.eu/facebook/ www.eesc.europa.eu/linkedin/ social.network.europa.eu/@EESC