IDFA supports World PI Week
World PI Week is a global campaign that aims to raise awareness and improve the 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 its 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 is working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with primary immunodeficiencies.
people worldwide may be living with PI.
%
of PI sufferers are still undiagnosed.
average time before diagnosis (for IDFA members).
World PI Week 2026
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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:
Healthcare Heroes
For World PI Week 2026, we’re shining a light on the healthcare professionals who make a difference in the journey to diagnosis.
Has a GP, immunologist, or other healthcare professional played a key role in helping you or your family member reach a diagnosis or access care? We’d love to hear your story.
With the 2026 theme “We Can’t Wait” — calling for early diagnosis, timely treatment, and support, your story can help highlight the importance of recognising PI sooner and celebrating the healthcare heroes who help make it happen.
Attend our World PI Week Webinar
Think PI: Living Well with Immunodeficiency: Challenges, Support and Daily Strategies.
In recognition of World PI Week, this webinar brings together immunologist Dr Katrina Randall and an IDFA Member for a meaningful conversation about life with primary immunodeficiency.
Through shared insights and personal experience, they will explore the challenges of diagnosis, navigating care, and the realities of daily life with PI – while offering practical advice, hope and support for the broader community.
Together We Are Stronger Than PI
The Jeffrey Modell Foundation (JMF) is working to gather a collective voice for World Primary Immunodeficiency Week – and we would love for you to be part of it!
Ahead of World Primary Immunodeficiency Week 2026, they are asking the global community to join them in showing the world that Together We Are Stronger Than PI.
To participate, submit a short video of yourself with the following script:
“My name is [Name], I’m a [Patient, Physician, Caregiver, Advocate, etc.] from [Location], and together we are stronger than PI.”
By participating, you’ll help raise awareness for immunodeficiencies and show others the power of connection.
Take your video (on your phone) with the above script, and send it via the link below!
Spread the Word
Your voice has the power to make a difference! Spread the word about Primary Immunodeficiencies (PIs) by sharing our video on your social media channels. You can help shine a light on the challenges faced by those living with PI.
Every post counts—join us in raising awareness and making an impact today!
2025 Campaign Highlights
Digital Campaign and Storytelling
A dedicated World PI Week landing page hosted campaign resources, donation links, and event details. During April, traffic peaked at 138 visits. Central to the campaign was our “Why PI” video series, produced with IPOPI support and featuring five members sharing their personal stories. Despite tight timelines, the videos reached 4.9K views—60% from new audiences—highlighting the power of lived experience.
IDFA member Adam was featured as a global ambassador in the international World PI Week campaign.
Email Communications
Targeted email updates reached healthcare professionals, members, and partners, achieving a 40% open rate and 8% click-through rate. Email was instrumental in promoting events and encouraging donations throughout the campaign.
Media and Partnerships
The campaign gained strong regional media support, with emotional stories capturing public interest. Collaborations with ASCIA, RVA, and AusPIPS extended our reach. Notably, an email from ASCIA triggered a 1,500% spike in webinar traffic. Partnerships played a vital role in amplifying campaign messages.
Webinar
IDFA co-hosted a webinar with AusPIPS Inc., attracting 108 registrations. The event benefited from strong collaboration and shared expertise, offering valuable education and engagement. Watch here
Social Media and Outreach
Across Facebook, Instagram, and LinkedIn, IDFA shared over 100 posts and stories. We received 61 shares, 198 interactions, and strong engagement from non-followers, particularly with video and story content. Social media played a key role in driving awareness and participation.
Stride for PI Fundraiser
“Stride for PI” encouraged the community to step up and support those with PI. Seven members pledged to walk, and five were featured in campaign videos. The fundraiser raised $1,233 and attracted local media coverage including WIN TV, Region Illawarra, Pulse Illawarra and Wave FM. A walk in Wollongong was hosted with staff and members in attendance.
Conversations Resource
We launched a new guide on how to talk about PI in everyday settings, including workplaces and health appointments. Expanding reach and tailoring content for younger audiences is a future priority. View resource.
The 2025 campaign demonstrated the power of member-led stories, multi-channel outreach, and collaboration. This annual initiative continues to grow, and IDFA remains committed to raising awareness and building community for those living with PI.
If you’re interested in working with IDFA to raise awareness of primary immunodeficiencies.