National strategy for rare diseases: Czech Republic

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The first Czech National Strategy for Rare Diseases was published by the Czech Ministry of Health for the years 2010-2020. A group consisting of relevant stakeholders from healthcare and authorities contributed to drafting this first Strategy. The Czech National Alliance for rare disease patient organisations, Rare Diseases Czech Republic, was only established in 2012 and quickly joined forces with the Rare Disease experts and the Ministry to implement this National Strategy. This led into the establishment of an Interdisciplinary and Interdepartmental Working Group for Rare Diseases at the Ministry of Health, implementing the Strategy and its subsequent 4 National Action Plans.

The new National Strategy for Rare Diseases 2021-31 was drafted by the experts and patient representatives and submitted to the Ministry of Health for approval. However, the process was delayed due to COVID-19 pandemic and, later on, stopped due to the introduction of a new methodology for drafting national strategies.

In 2023, a new 3-year-long project was launched – SYPOVO, which is aimed at setting up the system of care and standards within the Czech National Reference Network for rare diseases. The Ministerial Working Group for Rare Diseases was transformed into an Interdisciplinary Committee for Rare Diseases (MEKOVO) and meets regularly to implement the SYPOVO project, as well as the European project JARDIN, in which our experts play a vital part in leading several work packages. Within this project a new National Strategy for Rare Diseases 2026-2035 is being prepared, based on the updated methodology for drafting national strategies and integrating recent policy developments. It will be ready for approval by the newly formed Czech Government in early 2026.

Key highlights of the Czech Republic Rare Disease Strategy

The Czech Republic has endorsed their national centres of expertise to formally become members of European Reference Networks (ERNs), based on their specific medical expertise. Currently, 22 out of 24 ERNs include Czech centres of expertise.
The Czech Republic has a legislation in place which states the existence of the Highly Specialized Centres of Care for Rare Diseases. (Act no. 372/2011 Coll. on Health Services and Conditions of their Provision. § 113a)
Since 2022, a new national legislation came into force to enable a systemic entry of orphan drugs into Czech Reimbursement system. (Act no. 48/1997 Coll. on Public Health Insurance, § 39da)
Since 2022 we have had a definition of patient organisations in our legislation due to the fact that patient organisations take part in a decision-making process on the orphan drug reimbursement (Act no. 372/2011 Coll. on Health Services and Conditions of their Provision, § 113f)
Since 2024, the ORPHAcodes are implemented within our Centres of expertise.

Expert advice

Since 2014 Rare Diseases Czech Republic runs a national helpline in cooperation with RD experts from the National Coordination Centre for Rare Diseases within Motol Faculty Hospital (help@vzacna-onemocneni.cz)
Each centre of expertise in the Czech Republic can be contacted for specific information on the diseases they cover.

National rare disease healthcare pathways

This is a vital focus point of the future National Strategy for Rare Diseases (2026-2035). A Generic Care Pathway Model for Rare Diseases is under completion by the project SYPOVO (2023-2026) managed by the Czech Ministry of Health, based on the work of a group consisting of many stakeholders, mainly Rare Disease experts in cooperation with representatives from patient organisations.

National registry

There is currently no existing national registry for rare diseases, but there are preparations in place to implement one within a few years. However, some rare diseases have well-functioning registries.

Scientific research

There are specific research programmes for rare diseases in the Czech Republic:

RD-Factory managed by Czech Centre for Phenogenomics
EU-level research and funding is coordinated through the ERDERA project.

The role of Rare Diseases Czech Republic

Rare Diseases Czech Republic is an important stakeholder within initiatives related to rare diseases. It implemented many parts of the first Strategy and now is highly involved in the preparation of the new National Strategy for Rare Diseases for 2026-2035.

Relevant resources:

National contact:

Anna Arellanesová
Rare diseases Czech Republic
http://vzacna-onemocneni.cz
https://vzacni.cz
cavo@vzacna-onemocneni.cz