World PI Week 2023 Outcome Report is Out!

This year, the campaign emphasized how real-world data can be turned into knowledge for better PID care. Data can change lives by speeding up diagnosis, improving patient care, and fostering research into new treatments. World PI Week 2023 was celebrated in over 47 countries, bringing together people from across sectors, generations, and regions.

World PI Week 2023 counted on the support of Dr.Ruediger Krech, Director of the Department of Health Promotion, World Health Organization (WHO). The campaign articulated concrete policy recommendations to close the knowledge gap across regions and direct efforts towards improved use of real-world evidence for the benefit of patients.

First live event “Patient-Clinician Coffee Talk”
On 21 April, the very first World PI Week “Patient-Clinician Coffee Talk” happened live from UZ Leuven Hospital, in Belgium. The debate explored a multitude of topics surrounding data and outlined the value of patient registries. It culminated with the release of a new video highlighting the importance of data from the perspectives of organizations from across the world.

Why does data change lives? Real-life insights from the PID community
The “World PI Week Roadshow Series” brought campaigners to 5 destinations, showcasing the daily lives of a patient, a carer, a researcher, an industry partner, and a nurse across the globe as they speak about the difference that data makes in their lives or that of those around them. 

Some key highlights of World PI Week at local level
In Ecuador the Old Cathedral was illuminated with green and blue lights (World PI Week colours) in the city of Cuenca. France convened a run and Spain organised a hike in the mountains to show support to PID care. The Chinese patient organisation organised a Kite-Flying campaign in 4 cities that combined kite-flying activities with QR codes allowing participants to access a patient survey and support data collection. Germany held an impressive “Boy in the Bubble” demonstration in front of the Parliament in Berlin to increase policymakers’ awareness of PIDs, while Mexico launched “The Ball is in Your Court” Policy Campaign calling on the Government to act. Indonesia celebrated World PI Week with the kick-off of a pilot project to launch a national PID registry. Malaysia promoted awareness of PIDs in collaboration with the Ministry of Health on online portals. Social media awareness-raising activities took place in the majority of participating countries, including Canada where a new campaign entitled “Invisible No More” was launched asking for greater attention to be given to PIDs. Medical seminars for nurses, specialists and medical students took place in many countries including Argentina, Belarus, Cyprus, Estonia, Iceland, India, Indonesia, Iran and Japan. In Morocco, Malaysia and several other countries, blood donation drives were organised, as plasma-derived medicinal therapies are an important treatment option for many people with PIDs around the world, who rely on the generosity of donors.
 
These are just some examples of the many activities that happened around the world on behalf of and with PID patients. Many more are covered in this year’s report.
 

Download the Press Release here.
Download the Outcome report here.

If you have any questions or need support, please do not hesitate to get in touch. 
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World PI Week thanks its sponsors: Takeda, CSL Behring, and Chiesi.