IDFA is celebrating World PI Week

22nd-29th April 2023

World PI Week is a global campaign which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiencies (PI). 

It offers an opportunity to inform and educate health policymakers, schools and families, and the general public about PI to drive the earliest possible diagnosis and optimal treatment. 

Since inception in 2011, World PI Week has played a crucial role in raising awareness and understanding of primary immunodeficiency across the globe, and it’s continually gaining traction in multiple countries. 

World PI Week is observed every year from the 22nd of April and led by a global network of stakeholders – this steering committee are working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a primary immunodeficiencies.

people worldwide may be living with PI.


of PI sufferers are still undiagnosed.

average time before diagnosis (for IDFA members).

Ways to get involved with World PI Week

Everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public can participate in raising awareness and taking action for World PI Week.

Find out more about the ways you get can get involved below:

Share Your Story - for a chance to win 1 of 3 $100 gift cards.

On average, our members experience 9 years before a diagnosis and the journey is often overwhelming with a huge impact on quality of life and wellbeing. So, this year we invite everyone to share their story.

With your data and your stories, we can help raise awareness that early diagnosis benefits everyone, ourselves, our families including the health system.

Donate to Make a Difference to People Living with PI.

Primary immunodeficiencies are rare diseases which occur when a person’s immune system is absent or does not function properly. When a defect in the immune system is inherited (carried through the genes), it is called primary immunodeficiency.

By donating to IDFA, you will be helping us to:

  • Raise awareness for PID, specifically importance of access to early testing and proper diagnosis.
  • Help us connect with community members suffering or caring with someone with a PID around the country through support groups.

Stay in the Know

Stay up-to-date with all the latest news and upcoming activities for our campaign by signing up to our e-newsletter!

Don’t miss out on any major updates or events during World PI Week. Join our community and stay connected!

'Y Where You Are’ Social Media Photo Competition.

We’re giving away one $100 e-gift card to the most creative, innovative entry.

The Competition runs from 1st April 2023 to 29th April 2023.

The winner will be announced on the 4th of May 2023 via Facebook and Instagram.

Attend our Webinar: Use Your Voice – Self Advocacy

IDFA and Blue Wren Advocacy have teamed up to launch the Self-Advocacy Toolkit for World PI Week. This toolkit aims to assist individuals with PI and their families to become better self-advocates and navigate the challenges of managing these rare diseases.

The webinar will feature guest speakers who will share their experiences with self-advocacy and discuss how the toolkit can benefit people with PI.