March 16, 2026
The IRIS Connected Run: Running for Awareness
Patient organisations around the world are finding innovative ways to raise awareness of primary immunodeficiencies (PIDs) and bring their communities together, especially in April each year. In France, the patient association IRIS has successfully brought people together through its annual “Course Connectée”, a virtual run that mobilises patients, families, friends and supporters across the country and beyond.
The concept is simple and inclusive; participants can run, walk or cycle wherever they are, using a connected device or mobile application to record their activity. Over the course of the event, they share their kilometres and experiences, helping to raise awareness of PIDs while supporting the activities of the association.
The IRIS Connected Run has grown significantly in recent years, reflecting the increasing mobilisation of the French PID community. In 2024, around 850 participants joined the initiative, collectively covering 28,000 kilometres. Participants shared their routes, photos and messages of support across social media and within the IRIS network, helping to raise visibility for PIDs.
The 2025 run went above expectations, as the event brought together almost 1,200 participants, who collectively completed more than 43,000 kilometres. This strong growth demonstrates how the initiative has become an important moment of engagement for the community. Alongside the awareness, this initiative is the opportunity to raise funds via participants’ registration and also by selling t-shirts, caps and other accessories. Beyond the numbers, the connected run has become a powerful way to create solidarity and visibility for people living with PIDs, while strengthening the links between patients, families, friends and IRIS supporters. Amongst our supporters, Industries partners have made the connected run a communication tool, allowing awareness to spread even more.
These virtual runs offer a flexible format that can easily be adapted by other patient organisations as participants can join from anywhere and at their own pace. To support national member organisations interested in organising similar initiatives, IPOPI has developed resources within its NMO Toolkit, including the guide: “Fundraising – How to Organise a Virtual Run”.
Building on the success of previous editions, IRIS is already preparing the next Course Connectée, which will take place from 22 to 29 April 2026. The association hopes to mobilise an even larger community and continue to grow the collective impact of the initiative. By walking, running or cycling together, we all help raise awareness and show support for people living with PIDs.
So join the challenge by creating your Connected Run and help us run even further for the PID community in 2026 by using the following link: https://associationiris.org/evenements/course-connectee-2026/
