December 15, 2023

From the President’s desk

As we bid farewell to 2023 and look towards the horizon of 2024, it is a moment to pause, reflect, and celebrate the remarkable progress made in the field of Primary Immunodeficiencies (PIDs). Throughout the year, our collective efforts have been focused on various crucial areas, encompassing education, advocacy, support for patient organisations, and collaborative engagements among stakeholders. Together, we have taken significant strides towards improving the lives of individuals living with PIDs and their families.

Notably, the International Primary Immunodeficiencies Congress (IPIC), held in Rotterdam, emerged as a milestone event of unparalleled success. It broke records in terms of attendance, content, and the fostering of a smooth cooperative atmosphere. IPIC served as a catalyst for knowledge exchange, laying the groundwork for cutting-edge advancements in the clinical field.

However, despite our strides, concerns persist regarding plasma collection and the supply of immunoglobulins. The steady growth in global needs, particularly due to improved diagnoses of PIDs and the increasing population affected by Secondary Antibody Deficiencies, calls for growing attention. Our efforts are addressing legislative revisions at the European level (SoHO legislation), engaging with UNITAR in Argentina and Malaysia, ICSPP as per Africa, and tailoring specific advocacy advice in diverse countries like Brazil or Indonesia to ensure equitable access to essential treatments.

A significant impulse of our work has also been dedicated to enabling patient access to transformative and regenerative medicines. Initiatives like AGORA aim to facilitate access to gene therapies for patients with ultra-rare diseases in Europe, while the Transform Alliance aims at advocating for improving the regulatory and legislative systems that apply to transformative therapies and allow patients to access a timely treatment. In parallel, we strongly advocate for newborn screening, championing the case of SCID as a condition with existing curative treatment, emphasising the need for a stepwise approach that prioritises the development of robust and shared practices when it comes to rare diseases.

As we prepare for the upcoming year and beyond, we are guided by the insights gathered from our highly successful Global Stakeholder’s Summit. This event brought together high-level experts to envision the future of our field, enabling us to proactively prepare for the challenges and opportunities that lie ahead.

But coming to the end of 2023, our heartfelt wishes extend to everyone for joyful and peaceful moments with loved ones. We stand in solidarity with members of our community facing acute symptoms and challenges in accessing treatment and care, whether due to healthcare disparities or conflict zones. Let the dawn of 2024 mark a new chapter where our collective efforts drive us closer to achieving our unwavering mission: improving the quality of life for those living with PID!

Merry Christmas and Happy New Year!

Martine Pergent
IPOPI President