International Patient Organisation for Primary Immunodeficiencies

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Registration as it was on 23 Aug 2022
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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 2020 - Dec 2020

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 collaboration

    Main 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
    Rocky Bottom Trerieve
    Downderry PL11 3LY
    UNITED KINGDOM
    EU Office
    Avenue Louise 367
    Belgium 1050 Ixelles
    BELGIUM

    Website

  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    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 23 Aug 2022

    Name Start date End Date
    Mr Johan Prevot 14 Feb 2024 13 Feb 2025
    Ms Solis LEIRE 30 Aug 2023 29 Aug 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

  • 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

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2020 - Dec 2020

    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

    1,480,954€

    Major funding types in closed year

    Member's contribution, Other, Grants, Donations

    Major contributions in closed year

    TypeNameAmount
    Contribution CSL Behring 124,310€
    Contribution Takeda Pharmaceutical Co Ltd 248,219€
    Contribution Grifols 294,391€

    Major contributions in current year

    TypeNameAmount
    Grant Horizon 2020 31,322€

    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

    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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