October 20, 2025
News from the European Medicines Agency
IPOPI is pleased to announce the renewal of its mandate as a member of the Patients’ and Consumers’ Working Party (PCWP) at the European Medicines Agency (EMA) for the 2025–2028 term. This renewed mandate underscores IPOPI’s ongoing commitment to representing the voice of individuals living with primary immunodeficiencies (PIDs) in regulatory discussions and supporting patient-centred healthcare policy development across Europe.
The PCWP plays a crucial role in ensuring that patients and consumers’ perspectives are integrated into the evaluation and supervision of medicines by the EMA. As an established member of this working party, IPOPI contributes valuable insights based on the lived experiences of people with primary immunodeficiencies in Europe and worldwide.
Through its participation, IPOPI continues to advocate for equitable access to safe, effective, and high-quality medicines for the rare disease community. Collaboration within the PCWP allows IPOPI to work closely with other patient and consumer organisations, EMA representatives, and key stakeholders to promote meaningful patient engagement throughout the lifecycle of medicinal products—from development to regulatory approval and beyond.
For the new mandate, IPOPI will be represented by Otilia Stanga, IPOPI Board Member and Treasurer, as full member, and Leire Solis, IPOPI Health Policy and Advocacy Director, as an alternate member.
Otilia Stanga represented IPOPI at the first plenary meeting of the 2025–2028 mandate, where the agenda included:
- Welcoming the new mandate and introductions of PCWP members and observers
- Election of the PCWP co-chair and nomination of observers to the HCPWP
- Discussion of the draft work plan for 2025–2028
IPOPI remains committed to ensuring that the voices of people with primary immunodeficiencies are heard in shaping European discussions and decisions on the safety, efficacy, and accessibility of therapies.
