The International Patient Organisation for Primary Immunodeficiencies (IPOPI) welcomes the opportunity to contribute evidence for the impact assessment on the proposed European Innovation Act. We provide our input from the perspective of patients living with primary immunodeficiencies (PIDs) across the European Union.
IIP
IPOPI, the International Patient Organisation for Primary Immunodeficiencies
NGO · Belgium · EU Transparency Register 379847424451-15
1
position filed
in the 326 files tracked
1
legislative file
of 326 tracked
1
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 326 consultation files tracked so far (29,503 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 784 non-governmental organisations on this site, they rank #650 by legislative files engaged — a count of participation, not a measure of influence.
3
declared lobbying FTE
self-declared
—
declared costs / yr (floor)
3
EP accreditations
as declared to the register
2016
in the register since
Declares membership of
- IPOPI is a founding member of the Platform of Plasma Protein Users (PLUS)
- of Screen4Rare
- and a member of the following organisations: Eurordis
- European Patients’ Forum (EPF) →
- Health First Europe and Rare Disease International. IPOPI also participates in ERN RITA.
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026).
- Register category
- Non-governmental organisations
- Registered as
- International Patient Organisation for Primary Immunodeficiencies (IPOPI)
- Head office
- Brussels, Belgium
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
IPOPI, the International Patient Organisation for Primary Immunodeficiencies filed 1 position on 2 Oct 2025, across 1 of the 326 legislative files tracked here, attaching a full position paper 1 time.
What they argued
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Is this your organization?
Everything on this page comes from IPOPI, the International Patient Organisation for Primary Immunodeficiencies’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 If something is wrong or out of date, email info@policyspeak.com and we will correct it.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.