COVID-19 Learning Expedition Report released

IPOPI launched the COVID-19 Learning Expedition (LEX) in July 2020, to identify, analyse and provide recommendations on issues brought about by the COVID-19 pandemic for patients with primary immunodeficiency (PID). As people with PID are susceptible to infections, the COVID-19 pandemic has caused uncertainty and a desire to learn how to best cope with this condition in the current circumstances. The aim of this project was to assist our global PID community getting through this health crisis and to strengthen patient expertise on topics where they need to have their voices heard. IPOPI took this journey with several patient representatives from all over the world.

IPOPI is now releasing the COVID-19 LEX Report, gathering all the common experiences from this project channeled into recommendations. These recommendations cover a wide range of areas where PID patients have been affected since the start of the pandemic. The input from the participants of this project has clearly highlighted the double burden faced by PID patients during these past months. The experiences show that PID patients are not only affected more than the average citizen by matters concerning the general public, but also weighed down by additional issues specifically linked to their condition. The extra vulnerability this creates is something vitally important to address when discussing the effects of this pandemic for PID patients, and it is something we believe to have done in this report.

The report can be considered a content base, produced with the intention of supporting IPOPI’s National Member Organisations (NMOs) in their work during the COVID-19 pandemic, or in future similar scenarios. We hope that this will both inspire our members to take action in their national settings and support them when doing so. We do not believe in a “one size fits all approach” for COVID-19, instead the common experiences and recommendations contained in this report are for IPOPI’s NMOs to tailor to their own needs. We are proud of how the report allows for the patient perspective to be put in the spotlight and encourages patient expertise to be used and shared by IPOPI members from all over the world.

Report available here