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 2021 - Dec 2021
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 367
Brussels 1050 Ixelles
BELGIUMEU Office
Avenue Louise 367
Brussels 1050 Ixelles
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 19 Oct 2022
Name Start date End Date Solis LEIRE 30 Aug 2023 29 Aug 2024 Johan PREVOT 14 Feb 2024 13 Feb 2025 Mr Johan Prevot 14 Feb 2024 15 Apr 2024 Ms Solis LEIRE 30 Aug 2023 15 Apr 2024 Complementary Information
IPOPI has 7 FTE staff members, 0.75 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
-
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 2021 - Dec 2021
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
1,195,544€
Major funding types in closed year
Member's contribution, Grants, Other, Donations
Funding types "other" information
Major contributions in closed year
Type Name Amount Contribution CSL Behring 205,000€ Contribution Grifols 205,000€ Contribution Takeda Pharmaceuticals International AG 235,465€ Contribution IPOPI Board volunteering work 327,678€ 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 yearly audited, as required by the Charity Commission for England and Wales. -
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
MEP Alliance for Newborn Screening, TRANSFORM Alliance
Communication activities
Advocacy campaigns at European and national level, PID Forums at the European Parliament, position papers on relevant EU policy initiatives, contact with Members of the European Parliament, European Commission officials.
Other activities
IPOPI is member of the European Medicines Agency Patient and Consumer Organisations Working Party (PCWP). IPOPI also engages with European Commission officials or Members of the European Parliament on relevant policy initiatives that will have an impact on patients with Primary Immunodeficiencies.
- 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.
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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
- Meetings