International Patient Organisation for Primary Immunodeficiencies

Tweet this page
<
2016
2017
2018
2019
2020
2021
2022
>
Registration as it was on 19 Oct 2022
How to read and use this data card.
Download this datacard

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

1

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
    Avenue Louise 367
    Brussels 1050 Ixelles
    BELGIUM
    EU Office
    Avenue Louise 367
    Brussels 1050 Ixelles
    BELGIUM

    Website

  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    100%2
    50%2

    Lobbyists (Full time equivalent)

    3

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    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 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

    Major contributions in closed year

    TypeNameAmount
    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

    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

    1 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 publish information about such meetings. All information below comes from European Commission web pages.

Download this datacard