IPOPI is proud to announce that it has renewed its mandate as a member of the Patients’ and Consumers’ Working Party (PCWP) at the European Medicines Agency (EMA). This new term highlights the strong commitment to speaking up for people living with primary immunodeficiencies (PIDs). It also shows IPOPI’s dedication to supporting patient-centered healthcare policies across Europe.

The Role of the PCWP in European Medicines Regulation

The PCWP plays an important role at the EMA. It makes sure that patients’ and consumers’ views are part of how medicines are evaluated, regulated, and supervised. As a long-standing member of this group, IPOPI shares valuable knowledge drawn from the real-life experiences of people with primary immunodeficiencies in Europe and around the world.

Including patient perspectives helps ensure that new medicines and treatments truly meet patients’ needs. It is also crucial for improving safety, quality of care, and trust in the healthcare system.

Working Together for Better Access to Treatments

Thanks to its membership in the PCWP, IPOPI can work closely with other patient and consumer organisations. It also engages directly with EMA representatives and key stakeholders in healthcare and the pharmaceutical industry. This collaboration helps advocate for policies that improve access to safe, effective, and high-quality medicines for people with rare diseases, including primary immunodeficiencies.

Moreover, IPOPI aims to raise awareness about the importance of early diagnosis and better treatment options for PIDs. Through its work, the organisation strives to improve the quality of life for people affected by these rare conditions.

Strengthening Patient Engagement in the Regulatory Process

IPOPI believes that patients must play an active role in the life cycle of medicinal products. This includes drug development, clinical trials, regulatory approval, and post-marketing monitoring. By sharing the patient experience, IPOPI helps make sure that regulatory decisions focus on what truly matters to people living with rare diseases.

Dedicated Representatives for IPOPI

In this renewed mandate, IPOPI will be represented by Otilia Stanga, IPOPI Board member and Treasurer, as the full member of the PCWP. Leire Solis, IPOPI’s Health Policy and Advocacy Director, will serve as the alternate member. Their experience and dedication will help IPOPI bring the voice of PID patients to important discussions about regulatory science, patient safety, and new therapies.

Looking Ahead

IPOPI remains committed to working with the EMA and other partners to promote patient-focused policies and improve access to essential treatments. The organisation will continue to ensure that the voices of people living with primary immunodeficiencies are heard in Europe and beyond.