From the President’s desk

Drawing from our past experiences and looking ahead to future scenarios, IPOPI has embarked on the journey of creating our 2026-2030 strategic plan. Some might ask, why start now? The answer is simple: preparation is key. This process begins with a thorough understanding of the global environment, from healthcare specifics to broader societal changes. The world is evolving rapidly, and we are stepping into an era filled with uncertainty, both challenges and opportunities.

For patients with primary immunodeficiency (PID), any global threat brings twice the burden compared to the general population due to the nature of the disease. Yet, we remain steadfast in ensuring that access to diagnosis, treatment, and care continues to improve globally. We are committed to analysing emerging trends and understanding diverse perspectives to identify key opportunities and potential challenges ahead. By doing this, we position ourselves to seize opportunities and face challenges head-on, ensuring that our initiatives make a tangible impact on patients’ lives worldwide.

At the heart of our strategy is a patient-centred approach, ensuring that everything we do is aligned with the needs and priorities of the communities we serve.

This forward-looking exercise is not just about IPOPI as an organisation—it’s about mobilising our entire community. From our members, our board and staff, to our medical advisers and industry partners, everyone plays a vital role in shaping the future of our shared mission and guiding our annual action plans. Our focus is unwavering: we aim to develop projects that truly champion the cause of PID patients around the world.

But whilst we work on our future strategy, we still have several key engagements this year. One of the most significant is the upcoming Global Patient Meeting, where we will welcome delegates from many of our 75-member countries. This event will bring the IPOPI family together, and we are eagerly anticipating the exchange of energy, knowledge, and inspiration that will strengthen our collective efforts.

In addition to the Global Patient Meeting, IPOPI continues to tackle pressing issues through various initiatives. Our “Hard Talks” series remains a dynamic educational platform for exchanging ideas, while a PID Forum will engage newly elected Members of the European Parliament (MEPs) on the critical issue of medicine shortages and their impact on PID patients. We are also making strides in our efforts to develop SCID Newborn Screening through our S4R initiative, including participating in the 2024 Genomics in Newborn Screening Workshop in Ljubljana where the future is at stake. 

Our new educational leaflets, addressing specific conditions and transversal topics, are set to be published shortly. Plus, our upcoming mini-documentaries will shed light on the intricate world behind essential medicines. Preparations for IPIC 2025 in Prague are also progressing well, thanks to the dedicated support of our organisation and scientific committees. Lastly, 4 project leaders have been selected to receive funding from the newly launched IPOPI Research Programme.

These milestones, and many others, highlight the vibrancy of our community and the importance of our collective work. A heartfelt thank you to everyone who plays a part in making it happen.

As we look to the future, IPOPI is energised by the opportunities to connect with many of you in Marseille 2024, where we will strengthen relationships, share knowledge, and continue advocating for patients around the globe. We are excited about the journey ahead and can’t wait to take it together.

Let’s make every step count!