On behalf of the Board of Rare Diseases Czech Republic, a patient national alliance I plea for inclusion of funding of rare diseases in the EU's next long-term budget (MFF). Together with the Czech Ministry of Health and RD experts we have issued a Call to Action during the EU Council Czech Presidency in 2022 which was supported by 22 our of 27 member states (see attachment).
RDC
Rare Diseases Czech Republic
NGO · Czechia · EU Transparency Register 544306394364-33
1
position filed
in the 655 files tracked
1
legislative file
of 655 tracked
1
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 655 consultation files tracked so far (56,999 submissions, mostly 2021–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 1096 non-governmental organisations on this site, they rank #1021 by legislative files engaged, a count of participation, not a measure of influence.
0.2
declared lobbying FTE
self-declared
€10K+
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2024
in the register since
Declares membership of
- EURORDIS
Self-declared to the EU Transparency Register (snapshot 30 Sept 2026).
- Register category
- Non-governmental organisations
- Registered as
- Česká asociace pro vzácná onemocnění z.s. (ČAVO)
- Head office
- Praha, Czech republic
Self-declared to the EU Transparency Register (snapshot 30 Sept 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
Rare Diseases Czech Republic filed 1 position on 6 Nov 2025, across 1 of the 655 legislative files tracked here, attaching a full position paper 1 time.
What they argued
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Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.