July 18, 2023

From the President’s desk

“Life is not perfect, but it is wonderful.” These words, from our dear Board Member, Andrea Gressani, resonate deep in our hearts as we mourn his passing after his valiant battle with infection. As we reflect on his legacy, we realise how much this sentiment applies to our field, which has faced many challenges, but also seen astonishing progress during the past two decades.

A first example is Africa, where IPOPI recently organised a very successful patient meeting in collaboration with ASID’s 8th African meeting, in Casablanca, Morocco. The meeting witnessed the commitment of new countries, the realisation of concrete actions on the ground and the launch of advocacy plans to improve access to diagnosis and treatment for patients with primary immunodeficiency. In India, PGIMER Chandigarh organised an Indian meeting for patients and doctors, the first of its kind after the COVID-19 pandemic. IPOPI was honoured to participate in this event, witnessing the wealth of skills and determination to address the challenges facing our community in this region.

Collaboration, now more than ever, is the key to our success. One of our greatest achievements is the founding of the International Neonatal Screening Day (INSD), through our Screen4Rare alliance, with our partners at ISNS and ESID. This initiative has gained global recognition, highlighting the need for newborn screening, especially for conditions such as severe combined immune deficiency (SCID) where early treatment is life-saving. Additionally, initiatives such as UNITAR and ICSPP are raising hopes of facilitating access to plasma-derived medicines, further illustrating the power of collaboration.

Because a favourable legal framework for access to treatment is essential, we are actively engaged in the process of reviewing the SoHO legislation and the pharmaceutical package at EU level. We advocate for increased plasma collection worldwide, through the use of plasmapheresis where each country takes responsibility for contributing to global access rather than relying on a few nations that excel in this area. Similarly, in the area of advanced therapies, access is a critical need. We believe that financial innovation must align with scientific and medical advances, adapting to transformative changes driven by genomics, AI and other emerging technologies. It is essential that we move beyond practices that have proven successful in the past but that are no longer relevant.

As the summer season approaches, many of us are looking forward to a well-deserved break after a busy and, dare I say, hectic year. We will use this time to recharge our energy, ensuring that we return with renewed vigour to continue our fruitful and much-needed collaborations.

In closing, let’s remember that even though life isn’t perfect, it is truly wonderful. May Andrea Gressani’s legacy inspire us to rise to the challenges we face, celebrate our successes, and approach our work with warmth, positivity, and unwavering faith in the power of collaboration. Together, we can create a world where every individual has access to the diagnosis, treatment and care they deserve. This is our vision and our driving force!

Martine Pergent
IPOPI President