Rare Diseases Ireland is the national alliance for rare disease patient organisations in Ireland. As such we are concerned about innovation and the development and approval of medicines across all rare diseases, and timely access for people living with rare disease to those medicines.
RDI
Rare Diseases Ireland
NGO · Ireland · EU Transparency Register 309832251878-17
1
position filed
in the 583 files tracked
1
legislative file
of 583 tracked
1
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 583 consultation files tracked so far (42,224 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 964 non-governmental organisations on this site, they rank #886 by legislative files engaged — a count of participation, not a measure of influence.
0.1
declared lobbying FTE
self-declared
< €10K
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2023
in the register since
Declares membership of
- The Wheel
- Irish Platform Patient Organisations, Science & Industry
- EURORDIS - Rare Diseases Europe →
- Rare Diseases International
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026).
- Register category
- Non-governmental organisations
- Head office
- Dublin 7, Ireland
Self-declared to the EU Transparency Register (snapshot 2 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 Ireland filed 1 position on 8 Nov 2023, across 1 of the 583 legislative files tracked here, attaching a full position paper 1 time.
What they argued
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Everything on this page comes from Rare Diseases Ireland’s own submissions to the European Commission — we have added nothing and interpreted nothing. If something is wrong or out of date, email info@policyspeak.com and we will correct it. If you are an individual named in a record, our privacy policy sets out your rights to correction, objection and removal.
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.