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International Patient Organisation for Primary Immunodeficiencies

Acronym: IPOPI

General Information

Identification Code: 379847424451-15
Website: [object Object]
Entity Form: Non for profit organisation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 11/11/2016
Last Update: 9/29/2023
EP Accredited Number: 2

Mission & Interests

Goals: 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
Interests Represented: Does not represent commercial interests
Interests:
  • Competition
  • Employment and social affairs
  • Public health
  • Research and innovation
  • Single market
  • Trade
Levels of Interest:
  • global
  • european
  • national

Activities

Main EU Legislative Proposals: 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.
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.
Inter-institutional or Unofficial Groupings: Unofficial groupings

Head Office

Address: Avenue Louise/ Louizalaan 65, Bte 11
Post Code: 1050
City: Brussels
Country: BELGIUM
Phone: [object Object]

EU Office

Address: Avenue Louise/ Louizalaan 65, Bte 11
Post Code: 1050
City: Brussels
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: 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.

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 2
Members75 Percent: 0
Members: 4
Members F T E: 3
Info Members: IPOPI has 8 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.

Structure

Structure Type: Structure
Is Member Of: https://ipopi.org/organisations
Organisation Members: 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.