Overview
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Lobbying Costs
None declared
Financial year: Jan 2022 - Dec 2022
Lobbyists (Full time equivalent)
3 Fte (4)
Lobbyists with EP accreditation
0
High-level Commission meetings
2
Lobbying Costs over the years
-
Info
International Patient Organisation for Primary Immunodeficiencies (IPOPI)
EU Transparency Register
379847424451-15 First registered on 11 Nov 2016
Goals / Remit
IPOPI is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency patients worldwide through global collaboration.
IPOPI’s various projects and programmes are geared towards the 4 following strategic objectives:
1. To promote early diagnosis & ensure optimal access to care
2. To develop, strengthen and support National Member Organisation
3. To raise PID awareness globally
4. To stimulate stakeholder collaborationMain EU files targeted
Blood legislation, rare diseases, orphan medicinal product, advanced therapeutic medicinal products, European Reference Networks, crossborder healthcare directive, equal access to care, patients' rights, research and innovation, patient registries, European health data space, European health union, pharmaceutical strategy.
Address
Head Office
Avenue Louise/ Louizalaan 65, Bte 11
Brussels 1050
BELGIUMEU Office
Avenue Louise/ Louizalaan 65, Bte 11
Brussels 1050
BELGIUMWebsite
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People
Total lobbyists declared
4
Employment time Lobbyists 100% 2 50% 2 Lobbyists (Full time equivalent)
3
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
0 accreditations were / are live (in bold) for the selected state of 21 Nov 2024
Name Start date End Date Solis LEIRE 30 Aug 2023 30 Aug 2024 Johan PREVOT 14 Feb 2024 04 Oct 2024 Complementary Information
IPOPI has 9 FTE staff members, 0.50 FTE and 0.25 FTE staff members. IPOPI also counts with the contribution and work of its Board members and Medical Advisory Panel. IPOPI works with consultants in the area of public affairs and event management.
Person in charge of EU relations
Data not provided by Register Secretariat due to GDPR
Person with legal responsibility
Data not provided by Register Secretariat due to GDPR
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
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.
Member organisations
None declared
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2022 - Dec 2022
Lobbying costs for closed financial year
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Total organisational budget in closed year
2,446,713€
Major funding types in closed year
Donations, Grants, Member's contributions, Other
Funding types "other" information
NMO assessments: 6 450 € Corporate donations: 1 571 424 € Other donations: 24 735 € IPIC: 468 498€ Volunteer time: 375 606 €
Major contributions in closed year
Type Name Amount Contribution Grifols 303,375€ Contribution CSL Behring 211,125€ Contribution Volunteer work 375,606€ Contribution Takeda 302,637€ Other financial info
IPOPI accepts corporate sponsorship as long as sponsors accept the Corporate Relations Guiding Principles, that are available on the website: https://ipopi.org/partners/corporate-partners/
Aside from IPOPI’s own Code of Conduct, representatives of the organisation at the EMA must complete and sign the EMA’s Conflict of Interest rules.
IPOPI’s accounts are audited by an external auditor and approved by our members during the Annual General Assembly. -
EU Structures
Groups (European Commission)
None declared
Groups (European Parliament)
Unofficial groupings
Communication activities
IPOPI develops advocacy campaigns at European and national level, PID Forums at the European Parliament, etc with the objective of advocating towards policy makers on the different policies and dossiers that are of relevance to patients with primary immunodeficiencies.
IPOPI also engages, through Screen4Rare (partnership with the International Neonatal Screening Society and the European Society for Immunodeficiencies) on activities that aim at informing decision makers on newborn screening for treatable rare disorders.Other activities
None declared
Meetings
Meetings
2 meetings found. Download meetings
The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.
1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.
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Date 28 Sep 2023 Location Brussels Subject Meeting of Commissioner Kyriakides with newborn screening associations Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Karolina Herbout-Borczak (Cabinet member)
- Stella Kyriakides (Commissioner)
Other Lobbyists -
Date 08 Apr 2021 Location online Subject Health Union Cabinet Cabinet of Vice-President Margaritis Schinas Portfolio Promoting the European Way of Life Attending - Margaritis Schinas (Vice-President)
- Catherine Sustek (Cabinet member)
Other Lobbyists