International Patient Organisation for Primary Immunodeficiencies
Budget
€1,659,370
EP Access
2
accredited persons
Staff
4
3 FTE
EU Grants
None
Mission & Goals
IPOPI's mission is to improving the quality of life for people with primary immunodeficiencies (PID) and associated conditions by raising awareness, promoting equitable access to early diagnosis, personalised treatment through global collaborations, `partnerships and innovative solutions. IPOPI’s 4 strategic objectives 2026-2030: 1. Expand global access to early diagnosis and patient-centred care for PIDs and associated conditions through advocacy, awareness and innovation. 2. Strengthen NMO capacity-building programmes, deepen regional collaboration and support leadership development. 3. Drive global education and data-sharing initiatives to promote knowledge of PID and associated conditions, improve clinical care, and advance research. 4. Expand collaborative initiatives and partnerships to address the growing intersection of global health, innovative technologies, climate change and mental health in the PID and associated conditions community.
EU Legislative Interests
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, health technology assessment, critical medicines.
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.
Interests Represented
Does not represent commercial interests
Member Of
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.
Organisation Members
https://ipopi.org/organisations
Additional 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.
Commissioner Meetings
No recorded meetings with EU commissioners.