From the President’s desk

30 years already! 30 years ago, a handful of parents and doctors decided to create IPOPI, convinced that organised PID patients, in collaboration with doctors, could make a difference when facing the challenges posed by rare and unknown diseases like PIDs. This anniversary is the perfect opportunity to sincerely thank the members of successive Boards of Directors and staff who have brought IPOPI to where it is today: 69 member countries, a warm family of patient representatives and a strong community of very dedicated patient advocates working for the health and quality of life of patients with primary immunodeficiencies.

In 2022, we can be more than happy and proud of what has been accomplished, the progress in the diagnosis and treatment of PIDs is considerable! However, there is still a lot to do in terms of awareness, advocacy, and education, and if the advances are there, we must also work to ensure that they are global and that every patient has the same chance to benefit from them. This is why we currently have many important topics on our desk: sustainable access to medicines, with the emblematic case of immunoglobulins, where the need for more plasma for fractionation is urgent… Access to gene therapy which has proven its effectiveness for ultra-rare PIDs and which should be available in Europe and other world regions, the urgent need to develop research to combat multi-resistant bacteria, precision medicine and the personalisation of the patient approach that goes with it, the development of newborn screening, transitioning from childhood to adult age, ageing, … and of course the COVID-19 that is still in the air… A commitment to meeting these challenges is at the heart of IPOPI’s daily work…

Furthermore, IPOPI hosted a Global Stakeholder Summit where PID experts from different backgrounds participated in a foresight exercise to anticipate and prepare for the future. An exciting and necessary exercise aiming at understanding what science will bring in the forthcoming years as well as dealing with the uncertainty that governs the world today.

But for now, the excitement is growing as the leaders of our National Member Organisations around the world prepare for the face-to-face IPOPI Global Patient Meeting on October 12-15 in Gothenburg, Sweden. It will bring new opportunities for all of us to come together and have fruitful conversations leading to effective cooperation. Can’t wait to be there and to celebrate a friendship that lasts through the years!