Share your story

Only you can tell your story

Primary immunodeficiency (PI) is rare, so many people never hear a story like their own. Yours could change that.

Tell us about living with PI, or about someone you love who does. Every story is read by a member of our team. If yours is a fit, we may invite you to share it as a video, on a podcast, or in an article. Please note that we will always talk with you first, and nothing is published without your approval.

Why it matters

Stories help people recognize their own symptoms, find community, and understand what life with a rare condition is really like. They also help us show policymakers, researchers, and community leaders why this work matters.

What you can expect after sharing your story

1. Fill out the form below to share your story. You can share as much or as little as you would like. 
2. We'll be in touch. You can expect an email from a staff member within 72 hours of your submission. 
3. You decide. If we move forward with featuring your story, we'll review it with you beforehand to ensure it is accurate and something you are proud of.